Harker Washington 0250E 19146
Harker Washington 0250E 19146
Colleen M. Harker
A dissertation
Doctor of Philosophy
University of Washington
2018
Reading Committee:
Shannon Dorsey
Aaron R. Lyon
Department of Psychology
©Copyright 2018
Colleen M. Harker
University of Washington
Abstract
Determinants of Quality of Life in Caregivers of Children with Autism and Autism Concerns
Colleen M. Harker
Wendy L. Stone
Department of Psychology
Given the unique demands of raising a child with autism spectrum disorder (ASD), it is
necessary to understand the impact on the quality of life (QoL) of their caregivers. Though QoL
is considered an important outcome in health services research (Moons et al., 2006; Oliveira,
Carvalho, & Esteves 2016), there is a lack of knowledge about QoL in caregivers of children
with ASD or caregivers of children for whom there are ASD concerns, but no formal diagnosis.
The objectives of the current study were to (1) Examine how having a young child with ASD or
ASD concerns affects caregiver QoL, relative to children with other developmental concerns and
typical development; (2) Examine profiles across QoL domains within each caregiver group to
determine which QoL domains were most impacted relative to other domains; (3) Examine to
what extent three levels of determinants contribute to caregiver QoL: family demographic (child
age, family income, caregiver employment status, number of children in the home),
psychological (parenting stress), and health care (family-centered care); and 4) (Exploratory)
Examine the extent to which family centered care moderates the relation between parenting
i
The sample was drawn from a larger NIH study examining screening and referral
practices for children with ASD in primary care provider (PCP) practices and early intervention
(EI) agencies in Washington State. The sample was comprised of three groups: caregivers of
children with ASD or ASD concerns (ASD/ASD Concerns; n = 42), caregivers of children with
other developmental concerns (Other Concerns; n = 34), and caregivers of children with typical
parenting stress, family-centered care, and QoL at their time of entry in the study.
Results indicated that caregivers in the ASD/ASD Concerns group reported significantly
lower Psychological and Social QoL than caregivers in the Other Concerns group and the No
Concerns group, and significantly lower Environmental QoL and Physical QoL than caregivers
in the No Concerns group (Objective 1). For caregivers in the ASD/ASD Concerns group, Social
QoL was significantly lower than Environmental and Physical QoL and Psychological QoL was
significantly lower than Environmental QoL (Objective 2). Income, parenting stress, and family-
centered care were significant predictors for all four QoL domains, while the number of children
residing in the home was a significant predictor for Physical QoL only. There was also a
significant group by stress interaction for Environmental QoL, such that there was a stronger
negative relationship between parenting stress and Environmental QoL for caregivers in the
ASD/ASD Concerns group compared to caregivers in the No Concerns group (Objective 3).
Family-centered care did not moderate the relationship between parenting stress and QoL as
predicted (Objective 4). Overall, these findings suggest that future research is needed to
determine how to provide additional support to all caregivers, particularly low-income families
and caregivers who are experiencing high levels of parenting stress and low levels of family-
centered care.
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TABLE OF CONTENTS
iii
LIST OF FIGURES
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LIST OF TABLES
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ACKNOWLEDGMENTS
I first want to thank the families who participated in this research. Their generosity and
willingness to share their experiences will help broaden our understanding of the challenges
facing families of young children with ASD and ASD concerns. I want to express appreciation
for my advisor, Dr. Wendy Stone, for her mentorship during graduate school. I am grateful for
my committee members, Dr. Shannon Dorsey, Dr. Suzanne Kerns, Dr. Aaron Lyon, and Dr.
Susan Spieker, for their support and enthusiasm for this project.
I am indebted to the READi Lab, in particular Dr. Lisa Ibañez, for her patience and
innate teaching abilities, Lizzy Karp, for her ever-present enthusiasm and support, and Sarah
Edmunds, for her ceaseless loyalty, kindhearted spirit, and generous support with the statistical
I am immensely grateful for my clinical cohort, friends, and family for their unyielding
support over the past seven years, as well as the family members who are no longer with me, but
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DEDICATION
vii
Running Head: DETERMINANTS OF QOL IN CAREGIVERS
Introduction
impairments in communication and social functioning and the presence of restricted and
repetitive behaviors (American Psychiatric Association [APA], 2013). According to the Centers
for Disease Control and Prevention (CDC), the current prevalence rate of ASD in the United
States (U.S.) is 1 in 59 children (Baio et al., 2018). This rate represents a ten-fold increase within
the past 40 years, signifying a growing public health crisis, as service delivery systems struggle
to meet the needs of individuals with ASD. In the U.S. the lifetime cost of caring for an
individual with ASD is estimated to range from $1.4-2.4 million, equating to a nationwide
annual cost of $61-66 billion for children and $175-196 billion for adults (Buesche et al., 2014).
These costs, attributable to special education, residential care, and loss of individual and parental
productivity in the workforce, place a tremendous financial burden on caregivers and the national
Due to the heterogeneous nature of ASD, caregivers are tasked with managing the core
sensory interests and aversions) as well as other associated challenges, including limited adaptive
skills (e.g., toileting and feeding issues), aggression and self-injurious behaviors, psychiatric
comorbidities (e.g., attention deficit hyperactivity disorder [ADHD], anxiety), and/or medical
children with ASD receive a variety of services including speech, occupational, physical, and
intensive behavioral therapies. Additionally, caregivers are often actively involved in treatment
and trained to serve as interventionists for their children (Lord & McGee, 2001). Given the high
DETERMINANTS OF QOL IN CAREGIVERS
level of care that children with ASD require, it is not surprising that their caregivers experience
higher levels of stress, increased levels of anxiety and depression, poorer physical health,
children with other concerns and/or caregivers of children with typical development (Allik et al.,
2005; Brobst et al., 2008; Dabrowska & Pisula, 2010; Daniels et al., 2008; Estes et al., 2009;
Lavelle et al., 2014; Rao & Beidel, 2009; Singer 2006; Vohra, Madhavan, Sambamoorthi, & St
Peter, 2014). Given the unique and complex needs of children with ASD compared to children
with other special health care needs, and the associated psychological, physical, social, and
(WHO) as “an individual’s perception about their position in life in the context of the culture and
value system they live in and in relation to their objectives, expectations, standards, and
concerns… it is a broad ranging concept affected in a complex way by the person's physical
health, psychological state, level of independence, social relationships, personal beliefs and their
relationship to salient features of their environment” (WHO 1998; p. 11). QoL first emerged as a
research concept in the first half of the 20th century in the fields of medicine and economics.
Since the mid-1960s, QoL research has increased exponentially, and broadened its scope to
include both mental health (e.g., depression, schizophrenia) and developmental disorders (e.g.,
cerebral palsy, Down Syndrome; Moon et al., 2006). This increased focus on QoL is attributable
to modern treatment advancements, which have improved the prognosis of many diseases and
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DETERMINANTS OF QOL IN CAREGIVERS
disorders, increased treatment options, and expanded the cost-benefit factors for patients and
QoL is currently recognized as a critical benchmark for evaluating the quality and
outcome of health care (Moons et al., 2006), such that researchers and health care providers now
consider impact on QoL when evaluating the effectiveness of new interventions, rather than only
measuring symptom reduction (Oliveira, Carvalho, & Esteves 2016). QoL is used as an outcome
measure in studies investigating mental health services and substance use treatment to chronic
disease management (e.g., Barry & Zissi, 1997; Donovan, Mattson, Cisler, Longabaugh, &
Zweben, 2005; Osoba, 2011). QoL also has important public health implications; low QoL is
associated with high hospitalization rates (e.g., Mathews & May, 2007; Singh et al., 2004), high
health care expenditures (Campbell, Bishu, Walker, & Egede, 2017), and low survival rates in
patients with chronic illnesses (Montazeri, 2009; Steel et al., 2015). As such, QoL is considered
influencing regulatory guidelines established by public health agencies in Europe and the United
States (e.g., Food and Drug Administration [FDA]; National Health Service [NHS]; European
Notably, the construct of QoL is not without controversy, as there is a lack of consensus
both within and across fields about its definition (Felce, 1997; Gill et al., 1994; Muldoon et al.,
1998; Testa & Simonson, 1996), and therefore no widely accepted conceptual framework or
theoretical model of QoL unifying the research (Bakas et al., 2012). One critical issue is that
researchers often use the term ‘QoL’ interchangeably with the terms ‘health status,’ ‘health
utility,’ or ‘functional status’ (henceforth referred to as health status in this document for reader
clarity; Moons et al., 2006). While the latter terms represent an individual’s objective condition
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DETERMINANTS OF QOL IN CAREGIVERS
(e.g., diagnoses, symptom severity, mobility), QoL represents an individual’s subjective
appraisal of their current situation (i.e., life satisfaction; Moons, 2004; Moons et al., 2006). Other
researchers have opted to use the term ‘health related quality of life’ (HRQOL) as a compromise;
however, this term is also problematic, as it overemphasizes the role of health issues on an
individual’s QoL and limits comparability with physically healthy individuals (Moons, 2004).
Findings from empirical studies (Carr & Higginson, 2001; Garratt and Ruta, 1999; Moons et al.,
2005) and a meta-analysis (Smith et al., 1999) indicate that QoL and health status are related, but
because it leads to measurement issues, as many researchers use health status measures to assess
QoL. For example, the Short-Form Health Surveys (SF-12; SF-36; RAND SF-36; Hays,
Sherbourne, & Mazel, 1993; Ware & Sherbourne, 1992; Ware, Kosinski, & Keller, 1996) are the
most widely used QoL measures in the literature, though they were designed to be health status
measures, and not direct measures of QoL. The SF Health Surveys can be contrasted with the
World Health Organization’s Quality of Life measure (WHOQOL-BREF; WHO 1996), which
primarily assesses subjective satisfaction with functioning (e.g., “How satisfied [emphasis
added] are you with your ability to perform your daily living activities?”), rather than objective
degree of health or functioning (e.g., “How much of the time during the past four weeks did you
have a lot of energy?”). Unlike the SF Health Surveys, which include only a Mental (i.e.,
four QoL domains, which were identified through a systematic measurement development
process (WHO, 1995, 1996): Environmental QoL (e.g., living conditions, transportation),
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DETERMINANTS OF QOL IN CAREGIVERS
Physical QoL (e.g., energy, mobility), Psychological QoL (e.g., body image, self-esteem), and
Despite these issues, QoL is a construct that has been used worldwide to examine its
relation to health outcomes for adults as well as children with conditions ranging from chronic
medical diseases and psychiatric disorders to developmental disabilities (e.g., Chand, Mattoo, &
Sharan, 2004; Gogoi, Kumar, & Deuri, 2016; Holt et al., 2010; Jennes-Coussens, Magill-Evans,
& Koning, 2006; Rudolf & Watts, 2009; Vlachioti et al., 2016; Weidle, Jozefiak, Ivarsson, &
Thomsen, 2014; Yamazaki et al., 2005). Given the association between QoL and other health
outcomes, current research is focused on identifying factors that influence QoL, in order to
Determinants of QoL. Historically, there has been a poor distinction between indicators
of QoL and determinants of QoL across research studies, which has only exacerbated confusion
in the field (Moons et al., 2006). By definition, indicators are representations of a phenomenon;
for example, an indicator of diabetes is high blood sugar. Determinants are contributing factors
that influence a phenomenon (i.e., predictors); determinants of diabetes are age, race, diet, and/or
family history. Many researchers use health status as an indicator of QoL, when in actuality, it is
a potential (but not guaranteed) determinant of QoL (Moons, 2004). Moons and colleagues
(2006) cite the example of an ‘ardent fisherman’ who is a paraplegic; despite being confined to a
wheelchair, he may rate his QoL as high if he is able to go fishing. This example serves to
illustrate the concept of the ‘disability paradox’ (Albrecht & Devileger, 1999). According to the
their QoL, nor is their income, square feet of living space, or number of friends. Instead, these
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DETERMINANTS OF QOL IN CAREGIVERS
Ferrans and colleagues (2005) adapted the widely-used Wilson and Cleary (1995)
conceptual model of QoL (Eyler et al., 2002; McLeroy, Bibeau, Steckler, & Glanz, 1988; Wilson
& Cleary, 1995) in order to better-illustrate the multidimensional nature of QoL and its
determinants. The Ferrans et al. model is an ecological model of QoL, comprised of two levels of
environment characteristics include variables such as crime rates, pollution, and access to
outdoor space, while social environment characteristics include interactions with healthcare
providers, friends, and family. The Ferrans et al. model has been used as a conceptual framework
in studies examining QoL in a variety of populations, ranging from children with ASD and
adolescents with solid organ transplants to adults with medical conditions (Devine et al., 2011;
Faison, Burns, & Weed, 2016; Kuhlthau et al., 2014; Saban, Penckofer, Androwich, & Bryant,
2007)
Determinants of QoL that have been examined in children and adults can be categorized
into the levels outlined by Ferrans et al. (2005; i.e., individual and environmental). In terms of
individual characteristics, demographic (e.g., age, gender, income, and education; Klassen,
Anthony, Khan, Sun, & Klaassen, 2011; McDougall & Tsonis, 2009), biological (e.g., symptom
severity, co-morbidities, side-effects; Carod-Artal, Trizotto, Coral, & Moreira, 2009; Juenger et
al., 2002), and psychological determinants (e.g., stress, depression, anxiety, strain/burden, coping
style; Brigstocke, Donaldson, & Kalra, 2005; Friedland, Renwick & Mccoll, 2010; McCullagh;
Ravens-Sieberer & Bullinger, 1998) have all been examined in the literature. With regard to
cross walks; Emmerink & Roeg, 2016; Rantakokko et al., 2010) and social environment
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DETERMINANTS OF QOL IN CAREGIVERS
determinants (e.g., social support; Amir, Roziner, Knoll, & Neufeld, 2005; Khanna et al., 2011)
have been examined, though physical environment determinants have received less research
attention than social environment determinants. Research using multivariate analyses has found
that psychological variables (e.g., stress, depression) often emerge as stronger predictors of QoL
than demographic or biological variables (e.g., symptom severity; Chiò et al., 2004; Jönsson et
al., 2005), which is encouraging given that psychological variables are often more malleable
and/or responsive to intervention than variables like income or disease stage. Additionally,
though there is only emerging evidence, health care system variables at the physical environment
(e.g., distance from health services; primary care facilities-to-population ratio) and social
environment levels (e.g., healthcare satisfaction) are increasingly being examined as potential
determinants of QoL in both children and adults (Boncinelli, Pagnotta, Riccioli, & Casini, 2015;
Jia, Moriarty, & Kanarek, 2009; Ruggeri, Gater, Bisoffi, Barbui, & Tansella, 2002; Simon, Chan,
& Forrest, 2008), which represents an exciting area for future QoL research.
variables (e.g., depression), and/or limited social networks have been identified as determinants
of low QoL (Baernholdt, Hinton, Yan, Rose, & Mattos, 2012; Raggi et al., 2016). In pediatric
populations, QoL can be rated both by children (i.e., self-report) and by their caregivers (i.e.,
pediatric samples indicate that female gender, older age, low family income, limited parent
education, and the presence of physical or psychological conditions are associated with poor
QoL in children (Moreira et al, 2013; Ravens-Sieberer et al., 2007; Stevanovic, 2012; von
Rueden, et al., 2005). Similarly, findings from studies of parent-proxy rated QoL in non-clinical
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DETERMINANTS OF QOL IN CAREGIVERS
pediatric populations indicate that low income, parent unemployment, child comorbid
conditions, acute health complaints, and unmet medical needs are associated with poor QoL in
children (Houben-van Herten, Bai, Hafkamp, Landgraf, & Raat, 2015; Simon, Chan, & Forrest,
2008).
Given the stressors associated with parenting children with complex physical,
developmental, behavioral or emotional conditions, research has also revealed the importance of
understanding QoL in caregivers of children with special healthcare needs. QoL has been
extensively examined in caregivers of children with conditions ranging from cancer and ADHD
to cerebral palsy and intellectual disabilities (Gogoi, Kumar, & Deuri, 2016; Malhi & Singhi,
2005; Ones, Yilmaz, Cetinkaya, & Caglar, 2005; Yamazaki et al., 2005; Xiang, Luk, & Lai,
2009). Findings indicate that caregivers of children with special healthcare needs report lower
QoL than caregivers of typically developing children/healthy controls and adult population
norms (e.g., Klassen et al., 2008; Lawoko & Soares, 2002; Lin et al., 2005; Lv et al., 2009;
Romeo et al., 2010). In these studies, demographic variables (e.g., low income), psychological
variables (e.g., high levels of parenting stress, maladaptive coping styles), and social
environment variables (e.g., low levels of family-centered care) have been identified as
determinants of low QoL (Davis & Gavidia-Payne, 2009; Klassen et al., 2008; Lin et al., 2009;
Lowoko & Soares, 2003; Lv et al., 2009; Seliner, Latal, & Spirig, 2016) even when controlling
for child symptom severity (Lowoko & Soares, 2003; Staab et al., 1998).
Despite the established relevance of QoL research and the significant impact of having a
child with ASD, the QoL of caregivers of children with ASD has been relatively understudied
compared to other childhood conditions. In particular, there is a lack of knowledge about the
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DETERMINANTS OF QOL IN CAREGIVERS
QoL of caregivers of young children (i.e., < 5 years old) with a diagnosis of ASD. As research
indicates that children with ASD elicit different caregiving demands across their lifespan, it is
important to understand how QoL may be uniquely impacted for caregivers of very young
children with ASD (Russa, Matthews, & Owen-DeSchryver, 2015; Seltzer, Shattuck, Abbeduto,
& Greenberg, 2004). Furthermore, there is limited understanding about QoL in caregivers of
young children for whom there are ASD concerns, but no formal diagnosis. The dearth of
research about children with ASD concerns is concerning, given that this period is often a time
of great distress for families as they navigate the service delivery system and tolerate uncertainty
about their child’s symptoms (Zuckerman et al., 2015). To date, only one study has examined
QoL in a sample of caregivers of children with ASD concerns, and found that caregivers of
adolescents and young adults with ASD symptoms but no diagnosis reported lower QoL than
caregivers of adolescents and young adults with an ASD diagnosis and with typical development
(McKenachie et al., 2017), suggesting that the presence of ASD symptoms without diagnostic
Given the limited research about QoL in caregivers of children with ASD or ASD
concerns, both findings from studies that used validated QoL measures (e.g., WHOQOL-BREF)
and findings from studies that used health status measures as QoL measures (e.g., SF-36) will be
population. Of the studies that have been conducted, findings indicate that caregivers of children
with ASD report lower QoL than caregivers of children with specific learning disabilities (Khan
& Humtsoe, 2016), physical disabilities (Perumal et al., 2014), and typical development (Eapen
et al., 2014; Ezzat et al., 2017; Lee et al., 2009; Malhotra et al., 2012; McKechanie et al., 2017;
9
DETERMINANTS OF QOL IN CAREGIVERS
Perumal et al., 2014) as well as national population norms (Khanna et al., 2011; Kuhlthau et al.,
about determinants of QoL in caregivers of children with ASD. Studies that have been conducted
have examined variables similar to studies of children with other special health care needs,
determinant.
determinants of QoL in caregivers of children with ASD include employment status, family
income, number of children in the family, child age, caregiver education, and caregiver marital
status. A majority of studies have not found an association between child age (Ji et al., 2014;
Kuhlthau et al., 2014; Mahani et al., 2013; Wisessathorn et al., 2013), caregiver employment
status (Favero-Nunes & Antonio dos Santos, 2010; Ji et al., 2014; Piovesan et al., 2015; Shu,
2009; Siah & Tan, 2016), caregiver education (Dardas & Ahmad, 2014a; Dardas & Ahmad,
2014c; Ji et al., 2014; Kareem et al., 2014 ; Kuhlthau et al., 2014; Lee et al., 2009; Mahani et al.,
2013; Piovesan et al., 2015; Shu, 2009; Siah & Tan, 2016) or caregiver marital status (Favero-
Nunes & Antonio dos Santos, 2010; Ji et al., 2014; Mahani et al., 2013; Piovesan et al., 2015)
and caregiver QoL. Research in other caregiver populations has also found weak associations
between these demographic variables and QoL, particularly when included in multivariate
models (e.g., Klassen et al., 2011; Lin et al 2009; Lowoko & Soares, 2003).
Though research indicates that income is positively associated with Environmental QoL
(Favero-Nunes & Antonio dos Santos 2010; Kareem et al., 2014; Mahani et al., 2013; Piovesan
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DETERMINANTS OF QOL IN CAREGIVERS
et al., 2015), its association with other QoL domains in caregivers of children with ASD is less
clear. While some studies have found that income is positively associated with Physical Qol (Lee
et al., 2009), Psychological QoL (Favero-Nunes & Antonio dos Santos, 2010; Lee et al., 2009;
Mahani et al., 2013), and Social QoL (Favero-Nunes & Antonio dos Santos, 2010; Piovesan et
al., 2015), other studies have found no association between income and Physical (Favero-Nunes
& Antonio dos Santos, 2010; Mahani et al., 2013; Piovesan et al., 2015), Psychological
(Piovesan et al., 2015), and Social QoL (Favero-Nunes & Antonio dos Santos, 2010; Mahani et
al., 2013; Piovesan et al., 2015). Similarly, while studies of other caregiver populations have
found that number of children residing in the home is negatively associated with QoL (Bellin et
al., 2013; Eken & Tüzün, 2004), findings for caregivers of children with ASD are mixed, with
one study finding a positive association (Lee et al., 2009), one study finding a negative
association (Ji et al., 2014), and one study finding no association (Johnson et al., 2011).
of QoL in caregivers of children with ASD include child cognitive ability and ASD symptom
severity. Two studies found no association between child cognitive ability and overall QoL
(Kuhlthau et al., 2014; McKechanie et al., 2017); however, the findings for ASD symptom
severity are mixed. Three studies found no association between ASD symptom severity and
overall QoL (Kuhlthau et al., 2014; Lee et al., 2009; Perumal et al., 2014), while other studies
found that ASD symptom severity was negatively associated with overall QoL (Khanna et al.,
2011) and with Physical and Psychological QoL (Ji et al., 2014). Research findings from other
caregiver populations indicates that child symptom severity is not a significant determinant of
caregiver QoL when included in multivariate models with other variables such as parental
distress or coping style (e.g., Lowoko & Soares, 2003; Staab et al., 1998).
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DETERMINANTS OF QOL IN CAREGIVERS
Psychological determinants. Psychological variables that have been examined as
that the presence of maladaptive coping styles (Dardas & Ahmad, 2014a; Dardas & Ahmad,
2014c; Khanna et al., 2011 Siah & Tan, 2016), high levels of depression (Eapen et al., 2014;
Favero-Nunes & Antonio dos Santos, 2010; Piovesan et al., 2015), and high caregiver
burden/strain (Ezzat et al., 2017; Ji et al., 2014; Khanna et al. 2011; Khanna et al. 2012; Marsack
& Samuel, 2017) in caregivers of children with ASD are associated with low QoL. Research
findings from other caregiver populations support these results (e.g., Lowoko & Soares, 2003;
variables examined in caregivers of children with ASD, its association with QoL is relatively
understudied. Of the studies that have been conducted, results indicate that parenting stress is
negatively associated with overall QoL (Dardas & Ahmad, 2014b; Dardas & Ahmad, 2015;
Eapen et al., 2014; McKechanie et al., 2017) and negatively associated with the Environmental,
Physical, Psychological, and Social QoL domains (Eapen et al., 2014; Johnson et al., 2011; Lee
et al., 2009). These findings are consistent with studies that have found that parenting stress is
negatively associated with QoL in other caregiver populations, including caregivers of children
with other concerns (Fidika , Salewski, & Goldbeck, 2003; Wheeler, Skinner, & Bailey, 2008),
psychiatric issues (Crowley & Kazdin, 1998), and medical conditions (Litzelman, Catrine,
Social environment determinants. Social environment variables that have been examined
as determinants of QoL in caregivers of children with ASD include social support (Johnson et
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DETERMINANTS OF QOL IN CAREGIVERS
al., Khanna et al., 2011) and family functioning (Khanna et al., 2011). Johnson et al. found that
low social support (i.e., relationships that an individual can draw upon during stressful times)
was associated with low Physical and Psychological QoL. However, the results for family
functioning were conflicting; while Khanna et al. (2011) did not find an association between
family functioning and Physical or Psychological QoL; Johnson et al. (2011) found that lower
family functioning was associated with lower Physical and Psychological QoL for mothers and
Though there is some evidence about the influence of social support (i.e., interactions
with friends and family) on caregiver QoL, there is a notable lack of research about the influence
of caregiver interactions with healthcare providers. One variable that has been relatively
philosophy in which caregivers are recognized as experts on their children’s needs and are
included in decision-making processes with their child’s providers (King et al., 2004). The core
principles of family centered care outlined by the American Academy of Pediatrics (AAP) are as
follows: proving respectful care, honoring diversity, recognizing and building upon the strengths
of the family, facilitating choice, ensuring flexibility in policy, procedures, and practices, sharing
honest and unbiased information, providing formal and informal support, collaborating with
families at all levels of health care, and empowering families to make their own decisions
(Committee on Hospital Care, 2012). Rather than just focusing on the child, family-centered care
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DETERMINANTS OF QOL IN CAREGIVERS
Research indicates that high levels of family-centered care are associated with important
child and family outcomes for children with and without special healthcare needs, including
reduced emergency department visits (Brousseau et al., 2007), lower parenting stress (King,
King, Rosenbaum, & Goffin, 1999), greater healthcare satisfaction (Carbone et al., 2012; King et
al., 2004; Ngui & Flores, 2006), greater reported ease of navigating healthcare services (Ngui &
Flores, 2006), better caregiver well-being (King, King, Rosenbaum, & Goffin, 1999), and
improved child heath (McAllister, Sherrieb, & Cooley, 2009). High levels of family-centered
care are positively associated with QoL in caregivers of children with cancer (Klassen et al.,
2008) and developmental disabilities (Davis & Gavidia-Payne, 2009; Seliner, Latal, & Spirig,
2016), as well as QoL in children with neurological conditions (Moore & Trute, 2009). The
results of the Davis and Gavidia-Payne study (2009) are particularly relevant to the current
study; results of a hierarchical regression analysis revealed that family-centered care was the
strongest predictor of QoL in family members of children with developmental delays who were
enrolled in early intervention programs, when entered in a model with family income, family
provision for families of children with ASD (Gabovitch & Curtin, 2009; Homer et al., 2008), the
relation between QoL and family-centered care has yet to be examined in caregivers of children
with ASD. It is important to understand the association between these variables in this
population, given that caregivers of children with ASD report lower levels of family-centered
care compared to caregivers of children with other special health care needs (Kogan et al., 2008;
Vohra, Madhavan, Sambamoorthi, & St Peter, 2014) and children with mental health conditions
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DETERMINANTS OF QOL IN CAREGIVERS
Though research indicates that family-centered care is associated with both parenting
stress and caregiver QoL, there is a lack of knowledge about whether family-centered care
moderates the relation between parenting stress and QoL. Understanding whether family-
centered care acts as a moderator between these variables is important, as family-centered care
could be an effective point of intervention for PCP practices to improve outcomes for caregivers
of children with ASD or ASD concerns (King, King, Rosenbaum, & Goffin, 1999). Given the
lack of research in this area, it is useful to draw upon existing research that has examined the
social support is a social environment level determinant of QoL; however, it refers to support
received from friends and family, rather than support from healthcare providers. Research
indicates that social support moderates the relation between depression and QoL in the elderly
(Sun et al., 2017) and between symptom severity and QoL in patients with tinnitus (Murphy,
2012). This evidence of social support as a moderator is supported by the ‘buffering model’
proposed by Cohen and Wills (1985), which posits that social support protects individuals from
adverse effects of stressful life events. The buffering model is contrasted with the ‘direct effect
model’ which hypothesizes that social support has a beneficial influence on outcomes, regardless
of the amount of stress that an individual is experiencing. Though there is some evidence to
support the buffering model of social support in other clinical populations (e.g., Carpenter et al.,
2010), family-centered care has yet to be examined as a moderator between parenting stress and
caregiver QoL.
Current Study
While we have some knowledge about QoL in caregivers of children with ASD, many
questions still remain. The current study will attempt to address some of the limitations present
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DETERMINANTS OF QOL IN CAREGIVERS
in previous QoL research. In the current study, QoL in caregivers of children with ASD or ASD
concerns will be compared to those of caregivers of children with other concerns and caregivers
of children with typical development. This approach allows for comparison between diverse
caregiver groups, rather than relying on U.S. adult population norms. This study is also the first
to examine QoL in a sample of caregivers of young children (i.e., under age five) with ASD or
ASD concerns. As a majority of the sample will have yet to receive an official ASD diagnosis (n
= 10 ASD diagnosis), we will gain an understanding of how the presence of ASD symptoms in
young children may impact caregiver QoL even prior to diagnostic confirmation. Furthermore,
this study will also allow us to identify which QoL domains are most affected in caregivers of
children with ASD or ASD concerns. Lastly, this study will examine which family demographic,
caregiver psychological, and health care variables are determinants of QoL in caregivers of
children with ASD or ASD concerns, other concerns, and typical development and determine
whether there are unique determinants of QoL for caregivers of children with ASD or ASD
concerns. Overall, results from this study will inform our understanding of QoL in caregivers of
children with ASD or ASD concerns. These findings may have implications for policy changes
Objectives
The objectives of the study were to: 1) Examine how having a young child with ASD or
ASD concerns affects caregiver QoL, relative to children with other concerns and typical
development. Consistent with existing research for caregivers of children with ASD, it is
hypothesized that caregivers of children with ASD or ASD concerns will report lower levels of
QoL than children with other concerns and children with typical development across all four
QoL domains; 2) Examine profiles across QoL domains within each caregiver group to
16
DETERMINANTS OF QOL IN CAREGIVERS
determine which QoL domains were most impacted relative to other domains, in order to identify
the areas in which caregivers may need the most support. It is hypothesized that for caregivers of
children with ASD or ASD concerns, Psychological QoL will be the most impacted domain,
relative to Environmental, Physical, Social QoL, given that caregivers of children with ASD
consistently report higher levels of depression, anxiety, and stress than caregivers of children
with other concerns and typical development. 3) Examine to what extent three levels of
determinants contribute to caregiver QoL: family demographic (child age, family income,
(parenting stress), and health care (family-centered care). By identifying the determinants of
QoL, researchers and care providers can identify risk factors for low QoL, particularly in
caregivers of children with ASD, who are at-risk for experiencing poor QoL compared to other
caregivers. It is hypothesized that parenting stress will be the strongest predictor of QoL, given
research evidence that psychological variables are stronger predictors of QoL in multivariate
models than demographic or biological variables; 4) (Exploratory aim): Examine the extent to
which family centered care moderates the relation between parenting stress and QoL. It is
hypothesized that family centered care will moderate the relation between parenting stress and
caregiver QoL, such that, in the presence of high parenting stress, caregivers who report
receiving high degrees of family-centered care, will report higher QoL than caregivers who
report receiving low degrees of family-centered care. It is further hypothesized that this
association will be stronger for caregivers of children with ASD or ASD concerns, relative to
caregivers of children with other concerns and typical development, given that the demands of
raising a child with ASD are associated with increased parenting stress and a greater reliance on
17
DETERMINANTS OF QOL IN CAREGIVERS
healthcare systems to improve the well-being of caregivers, particularly those of children with
Method
Participants
Participants in the present study were drawn from a larger NIH-funded study that aimed
to examine developmental screening and referral practices in nine early intervention (EI)
agencies and nine primary care provider (PCP) practices across four geographically and
ethnically diverse counties in Washington State (Lewis, Skagit, Spokane, and Yakima County).
In the NIH study, caregivers of children with autism spectrum disorder (ASD), ASD concerns,
and other developmental concerns were recruited from both PCP practices and EI agencies,
while children with typical development (i.e., no ASD or other developmental concerns) were
recruited from PCP practices only. PCPs and EI providers assisted with recruitment for the larger
study. PCPs distributed study flyers and permission-to-contact forms to caregivers at 18-month
well-child visits and mailed flyers to all children at their practice between 16-20 months of age.
EI providers posted recruitment flyers at their agencies and mailed recruitment letters and
permission-to-contact forms to families of children at their agency between 16-36 months of age.
Caregivers initiated contact with the research team either by using the contact information
then completed phone screenings with caregivers in order to determine whether the family was
eligible to participate in the study. Families were excluded from the larger study if their child had
any severe visual, auditory, or physical impairments, and/or serious medical, genetic, or
neurological disorders.
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DETERMINANTS OF QOL IN CAREGIVERS
The present study included a subsample of participants (n = 188) from the larger NIH
study. Children were classified into one of three groups based on information that caregivers
provided during the eligibility screening process for the larger study: ASD/ASD Concerns (n =
42), Other Concerns (n = 34), or No Concerns (n = 112). Children were classified in the
ASD/ASD Concerns group for one of three reasons: (1) their caregiver indicated that they had an
existing diagnosis of ASD (n = 10); (2) they screened at-risk on an ASD screening tool in the
past, their caregiver explicitly endorsed having ASD concerns, and/or their caregiver reported
that a provider or another family member had concerns about ASD (n = 25); or (3) their
caregiver reported during eligibility screening that they had concerns about how their child
interacted with adults and/or peers and endorsed a concern about language or communication,
unusual toy play, unusual body movements, and/or over- or under-responsive sensory issues (n =
7), given that these symptoms represent core areas of impairment for children with ASD (APA,
2013). Children with ASD concerns were combined in the same subgroup as children with ASD
diagnoses, as caregiver responses during eligibility screening indicated that there was reason to
these children were displaying symptoms concerning for ASD. Children were classified in the
Other Concerns group if their caregiver expressed concerns about general development (e.g.,
delayed language or motor development, tantrums) but did not endorse any of the
aforementioned criteria for the ASD/ASD Concerns group. Caregivers of children in the No
Concerns group reported having no concerns about their child’s development during eligibility
screening.
Table 1 provides the demographic characteristics for caregivers and children in the three
groups. One-way ANOVAs were used to examine group differences in caregiver age, child age,
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DETERMINANTS OF QOL IN CAREGIVERS
number of children in the home, family income, and caregiver employment status. Chi-square
independence tests were used to examine group differences in child sex, caregiver race
(collapsed into White vs. Non-White), and caregiver ethnicity (Hispanic vs. Non-Hispanic).
Children in the No Concerns group were significantly younger than children in the ASD/ASD
Concerns (p < .01) and the Other Concerns groups (p < .01) and children in the Other Concerns
group were significantly younger than children in the ASD/ASD Concerns group (p < .01).
Caregivers of children in the ASD/ASD Concerns group reported significantly lower yearly
family income than caregivers of children in the Other Concerns group (p < .01) and the No
Concerns group (p < .01); there were no income differences between the Other Concerns and the
No Concerns groups. Caregivers of children in the ASD/ASD Concerns group were less likely to
be employed than caregivers of children in the Other Concerns group (p = .05); there were no
differences in employment status between the ASD/ASD Concerns and the No Concerns group
and between the Other Concerns and the No Concerns group. There were no group differences in
caregiver age, the number of children residing in the home, child sex, caregiver race, or caregiver
ethnicity. A majority of caregivers in the sample were mothers (n = 177; 94.1%). Differences in
caregiver’s relationship to the child could not be compared across groups due to the low
Procedure
As part of their participation in the larger study, caregivers were mailed questionnaires
every three months until their child was at least 36 months of age. The purpose of the
questionnaires was to measure child social communication (i.e., language and social skills) as
well as caregiver ratings of their quality of life, parenting stress and efficacy, concerns about
their child’s development, service enrollment, perceptions of family-centered care at their child’s
20
DETERMINANTS OF QOL IN CAREGIVERS
PCP practice, and attributions about their child’s behavior. The present study is based on select
questionnaires that caregivers completed at their time of entry into the study. Caregivers
completed all questionnaires online via REDCap (Research Electronic Data Capture), a secure,
web-based application designed to support data capture for research studies, hosted by the
Measures
Predictive measures. Three different levels of predictors were examined in the current
measure that was adapted from the Baby Siblings Research Consortium (BSRC) demographic
form. It assesses demographic characteristics including child and caregiver sex, age, race and
ethnicity, caregiver employment status, number of children in the family, and family income. In
the current study, child age, family income, and caregiver employment status, were included in
all main analyses to control for group differences on these variables, in addition to the number of
children residing in the home, which has been found to be a significant predictor of QoL in other
operationalized as parenting-related stress, and was measured using the Parenting Stress Index-
Short Form (PSI-SF; Abidin, 1990). The PSI-SF is a 36-item self-report measure designed to
assess the amount of stress that caregivers of children between one month to twelve years of age
experience in their caregiving role. Abidin (1995) reported good internal consistency for each of
21
DETERMINANTS OF QOL IN CAREGIVERS
the subscales (α = .80 - .87) and for the overall measure (α = .91). The PSI-SF was selected for
use in the current study because it is a brief and psychometrically sound measure that has been
used extensively in studies of parents of children with disabilities (e.g., Button, Pianta, &
Marvin, 2001; Macias, Saylor, Rowe, & Bell, 2003), including ASD (e.g., Davis & Carter, 2008;
which assesses the amount of distress that a caregiver experiences about the quality of their
interactions with their child (e.g., “Most times I feel that my child does not like me and does not
want to be close to me”), Difficult Child (DC), which assesses the amount of distress that a
caregiver experiences about their child’s challenging behavior (e.g., “My child seems to cry or
fuss more often than most children”), and Parental Distress (PD), which assesses the amount of
distress that a caregiver experiences in their caregiver role (e.g., “Since having a child I feel that
PSI-SF items are rated on a five point Likert scale ranging from “Strongly Disagree” (1)
to “Strongly Agree” (5). Items in each subscale are summed to produce three subscale scores that
range from 12 to 60. Scores for each of the three subscales are then summed to obtain a total
parenting stress score ranging from 36 to 180, with higher scores indicating higher levels of
parenting stress. In the current study, the PSI-SF total score was examined as a predictor of QoL
Health care predictor. The health care predictor in this study was operationalized as
family-centered care, and measured using the Measure of Processes of Care (MPOC-20; King,
King, & Rosenbaum, 2004). The MPOC-20 is a 20-item self-report measure designed to evaluate
caregiver perceptions of the degree of family-centered care delivered by their child’s primary
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DETERMINANTS OF QOL IN CAREGIVERS
health care providers (e.g., doctors, nurses). The MPOC-20 was specifically designed to measure
family-centered care for children with special health care needs, including chronic health
conditions and disabilities, and demonstrates adequate internal consistency (α = .63 - .92). The
MPOC-20 was chosen for use in this study because of its extensive use in studies of children
with disabilities (e.g., Bellin, Osteen, Heffernan, Levy, & Snyder-Vogel, 2011; Cunningham &
Rosenbaum, 2013; Tessier, Hefner, & Newmeyer, 2014) including children with ASD (Carbone,
Murphy, Norlin, Azor, Sheng, & Young, 2013; Hodgetts, Nicholas, Zwaigenbaum, &
McConnell, 2013).
The MPOC-20 is comprised of five subscales: Enabling and Partnership (3 items), which
measures the extent to which health care providers explain treatment options to caregivers and
respect their decisions; Providing General Information (5 items), which measures the extent to
which health care providers inform caregivers about general child development and community
resources; Providing Specific Information (3 items), which measures the extent to which health
care providers share individualized information with caregivers about their child’s development
and explain results from assessments; Coordinated and Comprehensive Care (4 items), which
measures the extent to which health care providers provide comprehensive and consistent care
across treatment teams; and Respectful and Supportive Care (5 items), which measures the extent
to which health care providers treat caregivers as equals and create a caring atmosphere.
MPOC-20 items are rated on a seven-point scale ranging from “Never” (1) to “To a Great
Extent” (7). Each item begins “To what extent do the people who work with your child…(e.g.,
fully explain treatment choices to you)?” Scores are computed for each subscale by calculating
an average of the ratings of all of the items in each subscale; scale scores range from 1 to 7, with
a higher score indicating a higher level of family-centered care. In the current study, an overall
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DETERMINANTS OF QOL IN CAREGIVERS
MPOC-20 score was calculated by averaging the mean score across all items in accord with
Carbone and colleagues (2013). The MPOC-20 total score was examined as a predictor of QoL
Outcome measure. QoL was the outcome in this study, and it was measured using the
quality of life (QoL). The WHOQOL-BREF was validated cross culturally in an international
field trial, demonstrating adequate internal consistency in the United States in a sample of
healthy adults and adults with physical and mental health issues (α = .69 - .87; Skevington,
Lotfy, & O’Connell, 2004). The WHOQOL-BREF was chosen for use in this study because of
its extensive use in assessing QoL in caregivers of children with ASD and other disabilities in
Asia, Australia, Europe, South America, and the Middle East (e.g., Dardas & Ahmad, 2014; de
Souza Lima Daltro et al., 2016; Eapen et al., 2014; Manee, Ateya, & Rassafiani, 2015; Mugno et
al., 2007; Piovesan et al., 2015; Shu & Lung, 2005). Notably, the WHOQOL-BREF has yet to be
used to examine QoL in caregivers of young children with ASD or ASD concerns in the United
States, which has prohibited cross-cultural comparisons of QoL in this population to date.
(7 items), Psychological (6 items), and Social (3 items). The Environmental domain measures
satisfaction with physical environment, including items on general living conditions, personal
safety, health services, and access to transportation. The Physical domain measures satisfaction
with physical capacities, including items on mobility, energy, sleep, pain, and functional
capabilities. The Psychological domain measures satisfaction with mental health, including items
on self-esteem, body image, and presence of negative thoughts (e.g., anxiety, depression). The
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DETERMINANTS OF QOL IN CAREGIVERS
Social domain measures satisfaction with social connectedness, including items on personal
WHOQOL-BREF items are rated on a five-point scale ranging from, “Very Dissatisfied”
(1) to “Very Satisfied” (5), with higher scores indicating higher QoL. The mean score of items
within each domain was used to calculate each domain score; domain scores were then
transformed on a scale from 0 to 100 to allow for comparison between domains with unequal
numbers of items (WHOQOL-BREF, 1996). Research indicates that a score of 60 represents the
cut-off in which QoL is deemed ‘neither good nor poor’ (Dardas & Ahmad, 2014c). See
Appendix A for a list of the items included in each domain. In the current study, the four
analyses.
Data Analysis
ANCOVAs were conducted to investigate the effect of group status on caregiver Environmental,
Physical, Psychological, and Social QoL, controlling for demographic variables on which the
groups differed (child age, family income, caregiver employment status) and variables that have
been examined in other studies (number of children residing in the home). In order to build the
most parsimonious models, only variables that were significant when initially entered in the
model were included as covariates in the final models (Yoder, Watson, & Lambert, 2015).
To examine which aspects of QoL were most impacted for caregivers children with
ASD/ASD concerns compared to caregivers of children with other concerns and typical
development, three repeated measures ANCOVAs were conducted to investigate whether there
were significant differences between QoL domains within each caregiver group, controlling for
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DETERMINANTS OF QOL IN CAREGIVERS
demographic variables (child age, family income, caregiver employment status, and the number
of children residing in the home). Only demographic variables that were significant when
initially entered in the models were included as covariates in the final models.
health care variables on each QoL domain, four multiple linear regression models were fitted
using a purposeful, stepwise process (Zhang, 2016). First, a block of four demographic variables
(child age, family income, caregiver employment status, and the number of children residing in
the home) was entered. Group status was then entered, after controlling for all demographic
variables that were significant in the first stage. Next, the caregiver psychological variable,
parenting stress, and an interaction term (group* stress) were entered, controlling for all
variables from the second stage. Then, the health care variable (family-centered care) and an
interaction term (group*family centered care) were entered, controlling for all variables from the
centered care) were entered to examine whether family-centered care moderated the relation
between parenting stress and QoL and whether it differs by group. Variables that were non-
significant in the stage that they were entered were removed for subsequent models. Variables
for which there were planned interactions (i.e., group) were retained in the model. Once all
interactions were examined, main effect variables that were non-significant were removed, such
that the final models represent the most parsimonious models predicting QoL. In order to
examine interactions between group (3-group categorical variable) and other predictors of
interest (continuous variables), group was dummy coded as two different variables (i.e., ASD
No Concerns reference group), which produced two different betas for each interaction (i.e., a
26
DETERMINANTS OF QOL IN CAREGIVERS
beta for ASD Concerns x parenting stress and a beta for Other Concerns x parenting stress). An
interaction involving group was significant if there was significant R2 change between a model
without the two interaction terms and a model that included the two interaction terms.
Results
levels of parenting stress than caregivers in the Other Concerns and the No Concerns groups (p <
.01); there were no differences between the Other Concerns and the No Concerns groups (see
Table 2). There were no group differences in caregiver ratings on the MPOC-20 (see Table 2).
examine the effect of group status (ASD/ASD Concerns, Other Concerns, No Concerns) on
Environmental, Physical, Psychological, and Social QoL controlling for four demographic
variables (child age, family income, caregiver employment status, number of children residing in
the home). If covariates significantly predicted the outcome of interest, they were retained in the
final model. Results indicated a significant group difference on Environmental QoL, [F(2,184) =
5.21, p < .01, ηp2 = .05], Psychological QoL, [F(2,184) = 5.13, p < .001, ηp2 = .05], and Social QoL,
[F(2,184) = 9.93, p < .01, ηp2 = .04], when controlling for family income, and a significant group
difference on Physical QoL, [F(2,183) = 5.28, p < .01, ηp2 = .06], when controlling for income and
the number of children residing in the home (see Figure 1, Table 2). Child age and caregiver
employment status were non-significant when entered in the original models and were thus not
included in the final models for each domain. Post hoc comparisons using Bonferroni corrections
indicated that caregivers of children in the ASD/ASD Concerns group reported significantly
27
DETERMINANTS OF QOL IN CAREGIVERS
lower Psychological QoL (M = 57.74, SD = 21.7) than caregivers of children in the Other
Concerns group (M = 73.9, SD = 15.6), t(187) = 3.1, p = .01, and caregivers of children in the No
Concerns group (M = 69.61, SD = 15.39), t(187) = 2.53, p = .04, as well as significantly lower
Social QoL (M = 52.18, SD = 27.24) than caregivers of children in the Other Concerns group (M
= 72.3, SD = 16.38 ) t(187) = 3.31, p < .01) and in the No Concerns group (M = 73.21, SD =
19.55), t(187) = 4.38, p < .01). Caregivers of children in the ASD/ASD Concerns group reported
the No Concerns group (M = 79.09, SD = 13.35), t(187) = 3.16, p = .01, but not caregivers of
children in the Other Concerns group (M = 75.09, SD = 17.74). Lastly, caregivers of children in
the ASD/ASD Concerns group reported significantly lower Physical QoL (M = 62.5, SD =
21.14) than caregivers of children in the No Concerns group (M = 77.97, SD = 15.94), t(187) =
3.24, p < .01) but not caregivers of children in the Other Concerns group (M = 75.84, SD =
17.78). There were no group differences between caregivers of children in the Other Concerns
group and those in the No Concerns group for any of the four QoL domains.
To address the second objective, three repeated measures ANCOVAs were conducted to
determine which aspects of QoL were most impacted for caregivers of children with ASD/ASD
Concerns compared to caregivers of children with Other Concerns and No Concerns. Analyses
controlled for demographic variables (child age, family income, caregiver employment status,
number of children residing in the home), such that demographic variables that were significant
when entered in the initial model were retained in the final model as covariates. Results are
28
DETERMINANTS OF QOL IN CAREGIVERS
Results indicated that when controlling for income, there were no significant within-
group differences between QoL domains for caregivers of children with Other Concerns [F(3, 96)
= .08, p = .97, ηp2 = .003] or caregivers of children with No Concerns [F(2.51, 275.85) = 2.05, p =
.12, ηp2 = .02]. However, there were significant within-group differences between QoL domains
for caregivers of children with ASD/ASD Concerns [F(3, 123) = 10.29, p < .01, ηp2 = .2]. Post-hoc
analyses revealed that for caregivers of children with ASD/ASD Concerns, Social QoL was
significantly lower than Environmental and Physical QoL (ps < .01) and Psychological QoL was
significantly lower than Environmental QoL (p = .02). There were no significant differences
between the other domains. Demographic variables were non-significant and not included as
Determinants of QoL
Social QoL. To address the third objective, a multiple linear regression model was fitted
to assess predictors of Social QoL using a systematic model building process. First, the block of
four demographic variables (child age, family income, caregiver employment status, and the
number of children residing in the home) were entered in the model. Income was significant and
thus was retained in future models. Group was then added to the model; group was significant
and was retained in future models. Next, parenting stress and a group*parenting stress interaction
term were added to the model; parenting stress was significant and thus retained in future
models. Family-centered care and a group*family-centered care interaction term were then added
to the model; family-centered care was significant and thus retained in future models. Finally, a
term (parenting stress*family-centered care*group) were added to the model. These interaction
terms were not significant and thus not retained in future models. When examining the
29
DETERMINANTS OF QOL IN CAREGIVERS
significant variables of interest together in the resulting model, group was no longer significant
and was not included in the final model. Results from the final model are provided in Table 3.
In the final model, income significantly predicted Social QoL such that higher income
was associated with higher Social QoL (β = .13, p = .02). Parenting stress predicted Social QoL,
such that lower parenting stress was associated with higher Social QoL (β = -.59, p < .01).
Family-centered care also predicted Social QoL, such that higher family-centered care was
Psychological QoL. A multiple linear regression model was fitted to assess predictors of
Psychological QoL using a systematic model building process. First, the block of four
demographic variables (child age, family income, caregiver employment status, and the number
of children residing in the home) were entered in the model. Income was significant and thus was
retained in the next model. Group was then added to the model; group was significant and
retained in future models. Then, parenting stress and a group*parenting stress interaction term
were added to the model; parenting stress was significant and thus retained in future models.
Next, family-centered care and a group*family-centered care interaction term were added to the
model; family-centered care was significant and thus retained in future models. Finally, a two-
way interaction term (parenting stress*family-centered care) and a three-way interaction term
(parenting stress*family-centered care*group) were added to the model. These interaction terms
were not significant and thus not retained in future models. When examining the significant
variables of interest in the resulting model, group was no longer significant and was not included
in the final model. Results from the final model are provided in Table 4 and described below.
In the final model, income significantly predicted Psychological QoL such that higher
income was associated with higher Psychological QoL (β = .16, p = .01). Parenting stress
30
DETERMINANTS OF QOL IN CAREGIVERS
predicted Psychological QoL, such that lower parenting stress was associated with higher
Psychological QoL (β = -.58, p < .01). Family-centered care predicted Psychological QoL, such
that higher family-centered care was associated with higher Psychological QoL (β = .13, p =
.02).
Physical QoL. A multiple linear regression model was fitted to assess predictors of
Physical QoL using a systematic model building process. First, the block of four demographic
variables (child age, family income, caregiver employment status, and the number of children
residing in the home) were entered in the model. Income, child age, and the number of children
residing in the home were significant and thus were retained in the next model. Group was then
added to the model; group was not significant but was retained in future models in order to test
planned interactions. Next, parenting stress and a group*parenting stress interaction term were
added to the model; parenting stress was significant and thus retained in future models. Then,
family-centered care and a group*family-centered care interaction term were added to the model;
family-centered care was significant and thus retained in future models. Finally, a two-way
(parenting stress*family-centered care*group) were added to the model. These interaction terms
were not significant and thus not retained in future models. When examining the significant
variables of interest in the resulting model, group and child age were not significant and were
thus not included in the final model. Results from the final model are provided in Table 5 and
described below.
In the final model, income significantly predicted Physical QoL such that higher income
was associated with higher Physical QoL (β = .20, p < .01). Number of children residing in the
home predicted Physical QoL in that fewer children in the home was associated with higher
31
DETERMINANTS OF QOL IN CAREGIVERS
Physical QoL (β = -.14, p = .01). Parenting stress predicted Physical QoL, such that lower
parenting stress was associated with higher Physical QoL (β = -.45, p < .01). Family-centered
care predicted Physical QoL, such that higher family-centered care was associated with higher
Environmental QoL. A multiple linear regression model was fitted to assess predictors
of Environmental QoL using a systematic model building process. First, the block of four
demographic variables (child age, family income, caregiver employment status, and the number
of children residing in the home) were entered in the model. Income and child age were
significant and thus were retained in next model. Group was then added to the model. Group was
significant and was retained in future models. Next, parenting stress and a group*parenting stress
interaction term were added to the model; these variables were significant and thus retained in
future models. Then, family-centered care and a group*family-centered care interaction term
were added to the model; family-centered care was significant and thus retained in future
models. Finally, a two-way interaction term (parenting stress*family-centered care) and a three-
way interaction term (parenting stress*family-centered care*group) were added to the model.
The two-way interaction was significant and thus retained in future models. When examining the
significant variables of interest in the resulting model, child age was no longer significant and
was not thus included in the final model. Results from the final model are provided in Table 6
In the final model, income significantly predicted Environmental QoL such that higher
income was associated with higher Environmental QoL (β = .28, p < .01). Parenting stress
predicted Environmental QoL, such that lower parenting stress was associated with higher
Environmental QoL (β = -.29, p < .01). There was also a significant interaction between
32
DETERMINANTS OF QOL IN CAREGIVERS
parenting stress and group, such that lower parenting stress was associated with higher
Environmental QoL overall, but this relation was only significantly different for caregivers of
.30, p < .01) and not significantly different for caregivers of children with Other Concerns
slopes revealed that there was a stronger negative relationship between parenting stress and
Environmental QoL for caregivers of children with ASD/ASD Concerns compared to caregivers
of children with No Concerns (see Figure 3). Family-centered care predicted Environmental
QoL, such that higher family-centered care was associated with higher Environmental QoL (β =
Discussion
The purpose of the current study was to understand the unique topography of quality of
life (QoL) in caregivers of children with autism spectrum disorder (ASD) and caregivers of
children for whom there are concerns about ASD. This study builds upon previous research that
examined QoL in caregivers of children with ASD; however, it is distinct in that it focused
exclusively on caregivers of young children under age five, in contrast to previous research,
which has primarily focused on school-aged children and/or adolescents. This study is the first to
include caregivers of young children for whom ASD is suspected, providing insight into how
ASD concerns may impact caregiver QoL prior to diagnostic confirmation— a distressing period
of uncertainty for many families as they navigate the service delivery system to seek diagnostic
clarity (Crane, Chester, Goddard, Henry, & Hill, 2016; Zuckerman et al., 2015). To date, only
one study has examined QoL in caregivers of children with ASD concerns. This study found that
caregivers of adolescent and young adult children with ASD symptoms and no diagnosis,
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DETERMINANTS OF QOL IN CAREGIVERS
reported lower QoL than caregivers of children with a confirmed ASD diagnosis and caregivers
of children with typical development (McKechanie et al., 2017), suggesting that the presence of
The first objective of this study was to examine how having a child with ASD/ASD
concerns affects caregiver QoL, relative to children with Other Concerns and typical
development. Overall, results revealed that caregivers in the ASD/ASD Concerns group reported
significantly lower Psychological and Social QoL than caregivers in the Other Concerns and No
Concerns groups, and significantly lower Environmental and Physical QoL than caregivers in the
No Concerns group. There were no group differences in QoL between caregivers in the No
Concerns and Other Concerns groups. As a majority of children in the ASD sample did not yet
have an official diagnosis of ASD, these results indicate that QoL may be negatively impacted in
It is not surprising that caregivers in the ASD/ASD Concerns group reported significantly
lower Psychological and Social QoL than caregivers in the Other Concerns and No Concerns
groups, given that these domains both evaluate areas of reported impairment in caregivers of
children with ASD. The Psychological QoL domain of the WHOQOL-BREF measures caregiver
satisfaction with one’s mental health (e.g., self-esteem, anxiety, depression) and the Social QoL
domain measures caregiver satisfaction with one’s social connectedness, (e.g., personal
relationships, friendships). Research indicates that caregivers of children with ASD report higher
levels of stress, anxiety, and depression and reduced relationship satisfaction compared to
caregivers of children with other concerns and/or caregivers of children with typical
development (Brobst et al., 2008; Dabrowska & Pisula, 2010; Daniels et al., 2008; Estes et al.,
34
DETERMINANTS OF QOL IN CAREGIVERS
2009; Rao & Beidel, 2009; Singer, 2006), as well as high levels of perceived stigma and social
isolation (Jones & Passey, 2005; Myers, Mackintosh, & Goin-Kochel, 2009; Woodgate, Ateah,
The findings in the present study are consistent with those of other studies that have
found that caregivers of children with ASD report lower Psychological and Social QoL than
caregivers of children with specific learning disabilities (Khan & Humtsoe, 2016), physical
disabilities (Perumal et al., 2014), and typical development (Eapen et al., 2014; Ezzat et al.,
2017; Lee et al., 2008; Malhotra et al., 2012; Pisula & Porębowicz-Dörsmann, 2017). In the
present study, the mean domain scores for caregivers in the No Concerns group (Psychological
Murphy, 2006). Results also revealed that for caregivers in the ASD/ASD Concerns group the
mean domain score for Psychological QoL (M = 57.7) was within 1 SD of the population norm
mean; however, the mean domain score for Social QoL (M = 52.2) was 1 SD below the
population norm mean. These findings suggest that Social QoL is impaired for caregivers in the
ASD/ASD Concerns group when compared to caregivers of children with typical development
and when compared to the population norm mean. This finding is concerning, given that research
indicates that lower levels of social support predict higher levels of depression and anxiety in
Results from the current study also indicate that caregivers in the ASD/ASD Concerns
group reported significantly lower Environmental and Physical QoL than caregivers in the No
Concerns group, but not caregivers in the Other Concerns group. The Environmental QoL
domain measures satisfaction with physical environment (e.g., general living conditions,
35
DETERMINANTS OF QOL IN CAREGIVERS
finances, access to health services), while the Physical QoL domain measures satisfaction with
physical capacities (e.g., mobility, energy, sleep). The results of the current study are not
surprising, given that research indicates that caregivers of children with ASD report greater
difficulty with many of the areas that these domains directly assess, including significant unmet
healthcare needs, high financial burden, poor physical health, sleep challenges, increased
children with other special healthcare needs and/or typical development (Crowe, 1993; Crowe &
Florez, 2006; Kogan et al., 2006; LaVelle et al., 2016; Meltzer, 2008; Vohra et al., 2014). The
findings in the present study are consistent with studies that have found lower Environmental
(Malhotra et al., 2012; Pisula & Porębowicz-Dörsmann, 2017) and Physical QoL (Lee et al.,
2008; Ezzat et al., 2017; Malhotra et al., 2012; Pisula & Porębowicz-Dörsmann, 2017) in
caregivers of children with ASD compared to caregivers of children with typical development
and with studies that have found no differences in Environmental and Physical QoL between
children with ASD and children with Down Syndrome and Cerebral Palsy (Malhotra et al., 2012;
In the present study, the mean domain scores for Environmental and Physical QoL for
caregivers in the No Concerns group (Environmental M = 79.1; Physical M = 77.9) were slightly
higher than WHOQOL-BREF population norms, but still within 1 SD (Environmental M = 75.1,
SD = 13.0; Physical M = 73.5, SD = 18.1; Hawthorne, Herrman, & Murphy, 2006). Results
revealed that both the Environmental QoL mean domain score (M = 65.3) and the Physical QoL
mean domain score (M = 62.5) for caregivers in the ASD/ASD Concerns group were also both
within 1 SD of the population norm means, suggesting that though caregivers in the ASD/ASD
Concerns group reported significantly lower Environmental and Physical QoL than caregivers of
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DETERMINANTS OF QOL IN CAREGIVERS
children with typical development, their QoL ratings were still within normal ranges when
The second objective of the study was to examine the profiles across QoL domains within
each caregiver group to determine which QoL domains were most impacted relative to other
domains. It is informative to identify the QoL domains in which caregivers of children with
ASD/ASD concerns particularly struggle, in order to triage use of targeted interventions. Results
revealed that there were no significant within-group differences between QoL domains for
caregivers in the Other Concerns group or caregivers in the No Concerns group. However, there
were significant within-group differences between QoL domains for caregivers of children with
ASD/ASD concerns, such that Social QoL was significantly lower than Environmental and
Physical QoL and Psychological QoL was significantly lower than Environmental QoL. These
findings suggest that Psychological and Social QoL are the most impacted domains for
caregivers of children with ASD/ASD concerns. To our knowledge, no other study has examined
within group differences in QoL domains in caregivers of children with ASD or ASD concerns.
Research indicates that when QoL scores are linearly transformed on a scale of 0 to 100,
a score of 60 represents the cut-off in which QoL is deemed ‘neither good nor poor’ (Dardas &
Ahmad, 2014c). For caregivers of children with ASD/ASD concerns, Social and Psychological
QoL were the only domains with mean scores that fell below this threshold (M = 57.7
Psychological QoL; M = 52.2 Social QoL). Notably, caregivers in the Other Concerns group and
caregivers in the No Concerns group did not have any mean domain scores under 60. When
comparing the means of caregivers in the ASD/ASD Concerns group to caregivers in the No
Concerns group, the mean domain score for Psychological QoL in caregivers in the ASD/ASD
Concerns group (M = 57.7) was within 1 SD of the mean for the No Concerns group (M = 69.6,
37
DETERMINANTS OF QOL IN CAREGIVERS
SD = 15.4). However, the mean for Social QoL in caregivers in the ASD/ASD Concerns group
(M = 52.2) was 1 SD below the mean for the No Concerns group (M = 73.2, SD = 19.5).
Given the high levels of stress, depression, anxiety, social isolation, and marital
dissatisfaction reported by caregivers of children with ASD, these results further emphasize that
caregivers of children with ASD and ASD concerns may benefit from interventions or support
services that target psychological well-being and social connectedness. While there is emerging
depression and increased life satisfaction in caregivers of children with ASD (Ferraioli & Harris,
2012; Neece, 2013), research is needed to determine the types of social supports (i.e., formal,
informal) that may be most beneficial for caregivers of children with ASD/ASD concerns. For
example, Parent to Parent (P2P) is a formal social support program that matches parents of
children with disabilities with peer mentors. Research indicates that parents in P2P report that
having someone ‘to listen and understand’ is one of the largest benefits of the program (Santelli,
Ginsbger, Sullivan, & Neiderhauser, 2002). Further research is needed to determine the relative
influence of formal social supports on caregiver Social QoL, compared to informal supports
The third objective of this study was to examine determinants (i.e., predictors) of QoL in
caregivers of children with ASD or ASD concerns, other concerns, and typical development. The
Ferrans et al. (2005) conceptual model of QoL was applied in order to examine the extent to
which two levels of determinants (individual and social environment) influenced caregiver QoL.
psychological, and biological factors that influence health outcomes” while social-
38
DETERMINANTS OF QOL IN CAREGIVERS
including the influence of family, friends, and healthcare providers” (p. 337). In keeping with the
model, individual characteristics included demographic variables (child age, family income,
caregiver employment status, number of children in the home) and one psychological variable
(parenting stress), while social environment characteristics included one health care variable
(family-centered care). Ferrans et al. posited that demographic variables are immutable —though
useful in helping target interventions for specific groups— while psychological and healthcare
In the current study, all caregivers were included in the same regression models for each
of the four QoL domains, with caregiver group entered as a predictor. The justification for not
conducting separate models for each caregiver group was drawn from existing QoL literature,
which indicates that disability status should be examined as a determinant (rather than an
indicator) of QoL (Moons et al., 2006). This rationale aligns with the disability paradox, which
posits that an individual’s QoL is not pre-determined by their disability (Albrecht & Devileger,
1999). Though the current study and other studies have found mean group differences across
QoL domains between caregivers of children with ASD or ASD concerns and other caregiver
multivariate analyses, which take into account other potentially important determinants.
Analyzing all caregivers in the same models allows for a better understanding as to whether there
are predictors of QoL that are unique to caregivers of children with ASD or ASD concerns. In
the current study, caregiver group was not a significant predictor of QoL for three out of four
QoL domains (i.e., Physical, Psychological, and Social QoL), suggesting that child’s disability
39
DETERMINANTS OF QOL IN CAREGIVERS
Overall, results indicate that income, parenting stress, and family-centered care were
significant predictors for all four QoL domains, while the number of children residing in the
home was a significant predictor for Physical QoL only. One challenge in comparing these
results with results of other studies is that a majority of existing studies that have examined
predictors of QoL in caregivers of children with ASD often do not include control groups of
other caregivers, and/or only examine predictors within their ASD samples. Results will thus be
interpreted based on their relationship to existing research in both ASD and non-ASD samples.
Demographic Determinants
Income was the only demographic factor associated with all four QoL domains
(Environmental, Physical, Psychological, and Social QoL). The only other demographic
determinant to predict QoL was the number of children in the home, which was associated only
with Physical QoL. Child age and caregiver employment status were not associated with any of
The finding that income was positively associated with Environmental, Physical,
children with intellectual disabilities (Lin et al., 2009; Tekinarlsan, 2013). In caregivers of
children with ASD, research overwhelmingly indicates that income is positively associated with
Environmental QoL (Favero-Nunes & Antonio dos Santos 2010; Kareem et al., 2014; Mahani et
al., 2013; Piovesan et al., 2015). This finding makes sense, as the Environmental QoL domain
includes items that ask about one’s satisfaction with earnings, safety, transportation, and access
to health services, which are variables that are associated with income (Vlahov et al., 2007).
However, for caregivers of children with ASD, the association between income and Physical,
Psychological, and Social QoL has been mixed, with some studies finding positive associations
40
DETERMINANTS OF QOL IN CAREGIVERS
and others finding no associations (Favero-Nunes & Antonio dos Santos, 2010; Mahani et al.,
2013; Piovesan et al., 2015). Notably, these studies often use bivariate analyses, which do not
allow for examination of the relative influence of multiple variables on a given outcome. Only
one study (Lee et al., 2008) used a multivariate analysis (i.e., hierarchical regression) and found
that income was positively associated with both Physical and Psychological QoL. Unfortunately,
Lee et al. used the SF-36, a health status measure, to examine QoL, which only includes Physical
Number of children residing in the home was negatively associated with Physical QoL,
such that the less children in the home, the higher the caregiver’s Physical QoL. Given that the
Physical QoL subscale includes items that ask caregivers to rate their satisfaction with their
energy, sleep, and physical pain, it is not surprising that having less children in the home would
be associated with higher caregiver QoL ratings. This finding is consistent with studies that have
found a negative association between number of children in the home and Physical QoL in
caregivers of children with cerebral palsy (Eken & Tüzün, 2004) and overall QoL in caregivers
of children with asthma (Bellin et al., 2013). When compared with studies that have examined
QoL in caregivers of children with ASD, this result is consistent with the findings of Ji et al.
(2014); However, it is inconsistent with the findings of a study that found that having more
children in the home was associated with higher caregiver Physical QoL (Lee et al., 2008) and
with a study that found no association between these variables (Johnson et al., 2011). Notably,
all three studies used the same health status measure (SF-36) to evaluate QoL and used multiple
regression analyses to examine the relationship between variables. Ji et al. argued that having
more children in the home is negative because it leads to stressful sibling conflict; however, Lee
et al. hypothesized that having more children in the home is positive because it allows parents to
41
DETERMINANTS OF QOL IN CAREGIVERS
delegate child-rearing tasks to older children. Cultural differences may explain the Ji et al.
findings, given that the study was conducted in China, where up until 2013 it was illegal for
families to have more than one child. However, it is surprising that the results of the current
study are not aligned with those of Lee et al. or Johnson et al., studies which were both
conducted in the U.S. and included similar mean numbers of children as the current study
(approximately 2 children per family). Given that the mean age of children in the current study
ranged from 19 to 26 months, while the mean age of children in the Johnson et al. and Lee et al.
studies ranged from approximately 7 to 9 years-old, it could be that having more children in the
family is negatively associated with Physical QoL when children are young and necessitate more
physical demands from caregivers (e.g., carrying, lifting) and allow for less delegation of
caregiving duties.
Parenting Stress
Results from the present study indicate that parenting stress was negatively associated
with all four QoL domains. Studies of parenting stress and in other caregiver populations have
also found that stress is negatively associated with QoL for caregivers of children with other
concerns (Fidika , Salewski, & Goldbeck, 2003; Wheeler, Skinner, & Bailey, 2008), psychiatric
issues (Crowley & Kazdin, 1998), and medical conditions (Litzelman, Catrine, Gangnon, & Witt,
2011). Though it is well-established that caregivers of children with ASD experience higher
levels of stress than caregivers of children with other developmental disorders and typical
development, the association between parenting stress and QoL in caregivers of children with
ASD is a relatively understudied area. Nevertheless, results from the present study are consistent
with previous research that has found a negative association between stress and Environmental,
42
DETERMINANTS OF QOL IN CAREGIVERS
Physical, Psychological, and Social QoL for caregivers of children with ASD (Eapen et al., 2014;
There was also a significant group by stress interaction for Environmental QoL in the
present study, such that there was a stronger negative relationship between parenting stress and
Environmental QoL for caregivers of children in the ASD/ASD Concerns group compared to
caregivers of children in the No Concerns group. No studies to date have examined interactions
between caregiver groups and parenting stress on QoL. One hypothesis as to why there was a
stronger negative relationship between parenting stress and Environmental QoL for caregivers of
Concerns group is that parenting stress (e.g., distress about challenging behaviors, poor parent-
child interactions) may serve as a proxy for child symptom severity. High levels of parenting
stress may be uniquely associated with certain items in the Environmental QoL domain (e.g.,
“Have you enough money/information to meet your needs?”) for caregivers of children with
ASD/ASD concerns due to the challenges presented by their child’s condition (e.g., intervention
costs, uncertainty about navigating the service delivery system), and less inherently associated
with Environmental QoL for caregivers of children with typical development. For other QoL
domains (Physical, Psychological, Social) the association between parenting stress and QoL is
more straightforward across caregiver groups. Overall, the results from the current study indicate
that parenting stress is negatively associated with all domains of QoL for caregivers of children
with ASD/ASD concerns, other concerns, and typical development. These results suggest that
Family-centered care
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DETERMINANTS OF QOL IN CAREGIVERS
Family-centered care describes a philosophy of care in which service providers share
collaboration, participation, and partnership (King et al., 2004). Results from the current study
indicate that family-centered care was a significant predictor —and one of the strongest
predictors — of all four QoL domains. This finding is consistent with research in other caregiver
populations that indicates that family-centered care is positively associated with QoL in samples
of caregivers of children with cancer (Klassen et al., 2008) and developmental disabilities (Davis
& Gavidia-Payne, 2009; Seliner, Latal, & Spirig, 2016). In fact, Davis and Gavidia-Payne (2009)
found that in a sample of caregivers of children with developmental delays who were enrolled in
early intervention programs, family-centered care was the strongest predictor of family QoL
when entered in a model with family income, family support, and intensity of child
behaviors/needs. Though research indicates that caregivers of children with ASD report lower
levels of family-centered care than caregivers of children with other special health care needs
(Kogan et al., 2008; Vohra, Madhavan, Sambamoorthi, & St Peter, 2014), family-centered care
has not yet been examined as a predictor of QoL in caregivers of children with ASD.
When considering the results of the present study, it is not surprising that family-centered
care was positively associated with Environmental QoL, given that there is an item in this
domain of the WHOQOL-BREF that specifically asks “How satisfied are you with your access
to health services?” However, the relation between family-centered care and the other QoL
domains is not as explicit. Empirical evidence indicates that family-centered care encompasses a
strengths-based approach that aims to promote resiliency in families, which may explain the
collateral impact of family-centered care on other QoL domains. Findings from a meta-analysis
examining the influence of family-centered care in pediatric samples indicated that parent self-
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DETERMINANTS OF QOL IN CAREGIVERS
efficacy (i.e., sense of control during interactions with providers) mediated the relation between
family-centered care and parent well-being, such that high degrees of family-centered care led to
increases in parent self-efficacy, which in turn, led to improvements in parent well-being (Dunst
& Trivette, 2009). These results suggest that provision of family-centered care may serve to
empower caregivers in their interactions with health care providers. Research also indicates that
caregiver empowerment may have a positive influence on child outcomes. Graves and Shelton
(1999) found that caregiver empowerment, as measured by the Family Empowerment Scale
(Koren, DeChillo, & Friesen, 1992; e.g., “I know what to do when problems arise with my
child,” “I know the steps to take when I am concerned my child is receiving poor services”),
mediated the relation between family centered-care and child outcomes, such that high levels of
family centered care, led to a greater sense of parent empowerment, which ultimately led to
improvements in child outcomes (Graves & Shelton, 1999). Considering that high levels of
family-centered care are associated with improvements in service access, timeliness of care,
service satisfaction, family functioning, and health care expenditures for children with special
health care needs (Kuhlthau et al., 2011; Kuo, Bird, Tilford, 2011), provides a more helpful
context for understanding the association between family-centered care and caregiver Physical,
Research indicates that children with ASD have more medical and psychological co-
morbidities, require more specialty care referrals, and have more frequent doctor’s appointments
than children without ASD. (Brachlow, Ness, McPheeters, & Gurney, 2007; Gurney,
McPheeters, & Davis, 2006). Researchers have hypothesized that the complexity of ASD,
compared to other childhood disorders with clear-cut presentations and treatment courses (e.g.,
asthma, diabetes), makes it more challenging for pediatricians to feel confident in their
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DETERMINANTS OF QOL IN CAREGIVERS
management of children with ASD, presenting barriers to their provision of family-centered care
(Levy et al., 2016; Lipstein et al., 2015). Indeed, pediatricians report that they lack knowledge
about ASD treatment and available resources in the community (Levy et al., 2016) and feel less
conditions and chronic/complex medical conditions (Golnik, Ireland, & Borowsky, 2009).
Despite these concerns, there is a lack of knowledge about interventions that promote family-
centered care for families of children with ASD (Levy & Fiks, 2018), as well as very limited
understanding about interventions that promote patient- and family-centered care in other clinical
important component of family-centered care— for families of children with disabilities, which
included recommendations for providers to use when helping families make treatment decisions:
present treatment options, review risks and benefits, check for understanding, arrange a follow-
up meeting (Adams et al., 2017). Despite these concrete strategies, to date, only one study has
empirically examined a family-centered care intervention for caregivers of children with ASD. In
their intervention, Golnik and colleagues (2012) examined outcomes of a medical home model
designed specifically for children with ASD. The model included use of a nursing and
scheduling coordinator, an ASD-specific referral guide for the community (e.g., dentists), and
provision of resources to support children during appointments (e.g., social stories). Results
revealed that caregivers whose children received care through the medical home model reported
significantly greater health care satisfaction and shared-decision making than caregivers in a
control group who received standard services within the same health care system. Given
movement in the field towards use of patient-centered outcome measures and adoption of the
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DETERMINANTS OF QOL IN CAREGIVERS
medical home model in primary care, it will be important for future research to determine
whether increasing provision of family-centered care in primary care practices leads to direct
The fourth and final objective of this study was to explore whether family-centered care
moderated the relationship between parenting stress and QoL. Though research indicates that
family-centered care is negatively associated with parenting stress (e.g., Hung, Liu, & Lin, 2015;
King et al.,1995; King, King, & Rosenbaum, 2004; O’Neil, Palisano, & Westcott, 2001) and
positively associated with caregiver QoL (e.g., Davis & Gavidia-Payne, 2009; Klassen et al.,
2008; Seliner, Latal, & Spirig, 2016), family-centered care has never been examined as a
moderator of parenting stress and QoL; therefore, this aim was considered exploratory. In the
conceptualized as support from healthcare providers. Therefore, consistent with the ‘buffering
model’ of social support posited by Cohen and Wills (1995), it was hypothesized that family-
centered care would buffer the impact of parenting stress on all four QoL domains, such that in
the presence of high parenting stress, caregivers who reported receiving high degrees of family-
centered care, would report higher QoL than caregivers who reported receiving low degrees of
family-centered care.
Results indicated that though parenting stress and family-centered care individually
predicted each of the four QoL domains in the present study, family-centered care did not
moderate the relationship between parenting stress and QoL as predicted. This finding is
consistent with the ‘direct effect model’ of social support instead of the ‘buffering model’
(Cohen & Wills, 1995), and suggests that though family-centered care and parenting stress
uniquely contribute to QoL in caregivers, family-centered care does not influence the strength of
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DETERMINANTS OF QOL IN CAREGIVERS
the relationship between stress and QoL. This finding has important practical implications, and
suggests that high degrees of family-centered care are important for all caregivers, regardless of
their amount of perceived parenting stress. Other studies have also found that social support did
not moderate the relation between stress/depression and QoL in clinical populations of adults,
though they found that stress/depression and social support had direct effects on QoL (Eom et
al., 2013; Panayiotou & Karekla, 2013). It is important to also consider that family-centered may
serve as a mediator between parenting stress and QoL, such that caregivers who experience high
degrees of parenting stress may perceive their relationship with their child’s health care
providers as less family-centered, in turn leading to poor QoL. Though family-centered care has
yet to be examined as a mediator, there is some evidence that social support may mediate the
relation between parenting stress and psychological distress. In a study investigating the
moderating and mediating effects of social support in mothers of children with hearing
impairments, Quittner and colleagues (1990) found that perceived social support mediated the
relation between parenting stress and depression/anxiety, such that mothers with higher stress
reported lower perceptions of social support and subsequently higher levels of psychological
distress. However, Quittner et al. could not find evidence to support social support as a
moderator.
Limitations
This study is not without limitations. First and foremost, this study is cross-sectional and
therefore it was not possible to determine the directionality of the findings. For example, though
low levels of family-centered care may negatively impact caregiver QoL, caregivers who report
low QoL may also be more likely to interpret their relationship with their child’s primary care
provider more negatively. The second limitation is that the composition of the caregiver groups
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DETERMINANTS OF QOL IN CAREGIVERS
was determined based on caregiver report and not through a formal child assessment. Children
were included in the ASD/ASD Concerns group if their caregiver endorsed an explicit concern
about ASD (e.g., existing diagnosis of ASD, screened at-risk on an ASD screening tool,
having concerns about a profile of symptoms indicative of ASD (e.g., concerns about social
interaction issues and language or communication, unusual toy play, unusual body movements,
and/or over- or under-responsive sensory issues). Therefore, a portion of the caregivers in the
ASD/ASD Concerns group may not be aware that the concerns that they endorsed are consistent
with symptoms of ASD. Regardless, this study indicates that whether caregivers have explicit
concerns about ASD or are just concerned about their child’s social functioning, communication,
or restricted and repetitive behaviors, their QoL is negatively impacted when compared to
caregivers of children with typical development and/or caregivers of children with other
concerns. A third limitation of the current study was that data about child behaviors were not
collected, thus it was not possible to examine how child symptom severity influenced caregiver
QoL. Though research is mixed as to whether child symptom severity is associated with
caregiver QoL in children with ASD (Allik et al. 2006; Ji et al., 2014; McKechanie et al., 2017;
Perumal et al., 2014; Wisessathorn et al., 2013), for the purposes of this study it would have been
useful to understand how child symptoms may influence caregiver QoL relative to other
predictors (e.g., parenting stress, family-centered care). A fourth limitation of this study, was that
the small proportion of fathers in the sample did not allow for comparison in QoL scores
between mothers and fathers, or examination of whether caregiver sex predicted QoL in
caregivers of children with ASD or ASD concerns. Given that research indicates that mothers
and fathers of children with ASD may display different patterns of QoL results (Dardas &
49
DETERMINANTS OF QOL IN CAREGIVERS
Ahmad, 2014b; Kareem & Ali, 2014; Mugno et al., 2007; Yamada et al., 2012), future research
should attempt to recruit parent dyads to compare whether there are differences in QoL ratings
and/or unique predictors of QoL for mothers and fathers of children with ASD or ASD concerns,
Conclusion
understanding QoL in caregivers of children with ASD or ASD concerns. Results indicated that
caregivers of children with ASD/ASD concerns reported lower Social and Psychological QoL
than caregivers of children with other concerns and typical development, and lower
Environmental and Physical QoL than caregivers of children with typical development.
Furthermore, within caregivers of children with ASD/ASD concerns, Social QoL was
significantly lower than Environmental and Physical QoL, and Psychological QoL was
significantly lower than Environmental QoL. When considered together, these results indicate
that Social QoL (i.e., satisfaction with personal relationships and support from friends) and
Psychological QoL (i.e., satisfaction with self, anxiety, depression) are particularly impaired for
caregivers of children with ASD or ASD concerns. Future research is warranted to identify effect
points of intervention for caregivers, potentially before children receive an official diagnosis of
ASD. Furthermore, results from the current study indicate that income, parenting stress, and
family-centered care were negatively associated with QoL for all caregivers. These findings
indicate that the presence of a disability should not be used as a sole determinant of a caregiver’s
QoL. The only difference in predictors across caregiver groups was a significant group by stress
interaction for Environmental QoL, such that there was a stronger negative relationship between
parenting stress and Environmental QoL for caregivers of children with ASD/ASD concerns
50
DETERMINANTS OF QOL IN CAREGIVERS
compared to caregivers of children with typical development. Future research should determine
whether interventions to improve parenting stress lead to increased Environmental QoL for
Environmental QoL (e.g., safety, finances, opportunities for leisure) lead to reductions in
parenting stress.
Lastly, family-centered care did not moderate the relationship between parenting stress
and QoL, suggesting that all caregivers can benefit from receiving high levels of family-centered
care— not just exclusively caregivers who report high levels of parenting stress. As family-
centered care was one of the strongest predictors of QoL across all four QoL domains, future
particularly for caregivers of children with ASD/ASD, who are at risk for experiencing lower
levels of family-centered care than other caregiver groups. In sum, these findings suggest that
future research is needed to determine how to provide additional support to all caregivers,
particularly low-income families and caregivers who are experiencing high levels of parenting
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References
Abidin, R. (1990). The Parenting Stress Index Short Form-Test Manual. Pediatric Psychology
Adams, R. C., & Levy, S. E., AAP COUNCIL ON CHILDREN WITH DISABILITIES. (2017).
Albrecht, G. L. & Devlieger, P. J. (1999). The disability paradox: High quality of life against all
Allik, H., Larsson, J. O, & Smedje, H. (2006). Health-related quality of life in parents of school-
age children with Asperger syndrome or high-functioning autism. Health and Quality of
Amir, M., Roziner, I., Knoll, A., & Neufeld, M. (1999). Self efficacy and social support as
mediators in the relation between disease severity and quality of life in patients with
Baernholdt, M., Hinton, I., Yan, G., Rose, K., & Mattos, M. (2012). Factors associated with
quality of life in older adults in the United States. Quality of Life Research, 21(3), 527-
534.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., & Warren, Z., … Dowling,
52
DETERMINANTS OF QOL IN CAREGIVERS
Bakas, T., McLennon, S. M., Carpenter, J. S., Buelow, J. M., Otte, J. L., Hanna, K. M., ...
Barry, M. & Zizzi, A. (1997) Quality of life as an outcome measure in evaluating mental health
Bellin, M. H., Kub, J., Frick, K. D., Bollinger, M. E., Tsoukleris, M., Walker, J., ... & Butz, A.
M. (2013). Stress and quality of life in caregivers of inner-city minority children with
Bellin, M. H., Osteen, P., Heffernan, C., Levy, J. M., & Snyder-Vogel, M. E. (2011). Parent and
health care professional perspectives on family-centered care for children with special
health care needs: are we on the same page? Health & Social Work, 36(4), 281-290.
Boncinelli, F., Pagnotta, G., Riccioli, F., & Casini, L. (2015). The determinants of quality of life
in rural areas from a geographic perspective: The case of Tuscany. Review of Urban &
Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in
mothers of children with autism. Focus on Autism and Other Developmental Disabilities,
17, 208-21.
Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison
of indicators for primary care medical home between children with autism or
asthma and other special health care needs. Archives of Pediatrics and Adolescent
53
DETERMINANTS OF QOL IN CAREGIVERS
Brobst, J. B., Clopton, J. R., & Hendrick, S. S. (2009). Parenting children with autism spectrum
Buescher, A. V., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum
disorders in the United Kingdom and the United States. Journal of the American Medical
Button, S., Pianta, R. C., & Marvin, R. S. (2001). Partner support and maternal stress in families
raising young children with cerebral palsy. Journal of Developmental and Physical
Campbell, J. A., Bishu, K. G., Walker, R. J., & Egede, L. E. (2017). Trends of medical
expenditures and quality of life in US adults with diabetes: the medical expenditure panel
Carbone, P. S., Murphy, N. A., Norlin, C., Azor, V., Sheng, X., & Young, P. C. (2013). Parent
and pediatrician perspectives regarding the primary care of children with autism spectrum
Carod-Artal, F. J., Trizotto, D. S., Coral, L. F., & Moreira, C. M. (2009). Determinants of quality
of life in Brazilian stroke survivors. Journal of the Neurological Sciences, 284(1), 63-68.
Carpenter, K. M., Fowler, J. M., Maxwell, G. L., & Andersen, B. L. (2010). Direct and buffering
Carr, A. J. & Higginson, I. J. (2001). Measuring quality of life: are quality of life measures
54
DETERMINANTS OF QOL IN CAREGIVERS
Chand, P. K., Mattoo, S. K., & Sharan, P. (2004). Quality of life and its correlates in patients
Chio, A., Gauthier, A., Montuschi, A., Calvo, A., Di Vito, N., Ghiglione, P., & Mutani, R.
Cohen, S., & Wills, T. A. (1985). Stress, social support and the buffering hypothesis.
Committee on Hospital Care, Institute For Patient-and Family-Centered Care (2012). Patient-and
Crowe, T. K. (1993). Time use of mothers with young children: The impact of a child’s
Crowe, T. K., & Florez, S. I. (2006). Time use of mothers of school-aged children: A continuing
Crowley, M. J. & Kazdin, A. E. (1998). Child psychosocial functioning and parent quality of life
among clinically referred children. Journal of Child and Family Studies, 7, 233-251.
Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of
pre-school children with autism and Down syndrome. Journal of Intellectual Disability
55
DETERMINANTS OF QOL IN CAREGIVERS
Daltro, M. C. D. S. L., Nunes, E. M., de Moraes, J. C., Montanari, P. M., Nobre, J. D. O. C.,
Daniels, J. L., Forssen, U., Hultman, C. M., Forssen, U., Hultman, C. M., Cnattingius, S., Savitz,
D. A., Feychting, M., & Sparen, P. (2008). Parental psychiatric disorders associated with
Dardas, L. A., & Ahmad, M. M. (2014). Validation of the World Health Organization’s quality
of life questionnaire with parents of children with autistic disorder. Journal of Autism and
Dardas, L. A., & Ahmad, M. M. (2014a). Psychosocial correlates of parenting a child with
Dardas, L. A., & Ahmad, M. M. (2014b). Predictors of quality of life for fathers and mothers of
1333.
Dardas, L. A., & Ahmad, M. M. (2014c). Quality of life among parents of children with autistic
disorder: A sample from the Arab world. Research in Developmental Disabilities, 35(2),
278-287.
Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with
autism spectrum disorders: Associations with child characteristics. Journal of Autism and
56
DETERMINANTS OF QOL IN CAREGIVERS
Davis, K., & Gavidia-Payne, S. (2009). The impact of child, family, and professional support
Devine, K. A., Reed-Knight, B., Loiselle, K. A., Simons, L. E., Mee, L. L., & Blount, R. L.
Donovan, D., Mattson, M., Cisler, R., Longabaugh, R., & Zweben, A. (2005). Quality of life as
Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of stress in
parents of children with autism. Community Mental Health Journal, 37(1), 39-52.
Dunst, C. J., & Trivette, C. M. (2009). Meta-analytic structural equation modeling of the
Eapen, V., Črnčec, R., Walter, A., & Tay, K. P. (2014). Conceptualisation and development of a
quality of life measure for parents of children with autism spectrum disorder. Autism
Eker, L., & Tüzün, E. H. (2004). An evaluation of quality of life of mothers of children with
Emmerink, P. M. J., & Roeg, D. P. K. (2016). Predictors of quality of life of people receiving
Eom, C. S., Shin, D. W., Kim, S. Y., Yang, H. K., Jo, H. S., Kweon, S. S., ... Park, J. H. (2013).
Impact of perceived social support on the mental health and health-related quality of life
57
DETERMINANTS OF QOL IN CAREGIVERS
in cancer patients: results from a nationwide, multicenter survey in South Korea. Psycho-
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting
stress and psychological functioning among mothers of preschool children with autism
Eyler, A. E., Wilcox, S., Matson‐Koffman, D., Evenson, K. R., Sanderson, B., Thompson, J…
& Rohm-Young, D. (2002). Correlates of physical activity among women from diverse
racial/ethnic groups. Journal of Women’s Health and Gender Based Medicine, 11(3),
239‐253.
Ezzat, O., Bayoumi, M., & Samarkandi, O. A. (2017). Quality of life and subjective burden on
family caregiver of children with autism. American Journal of Nursing, 6(1), 33-39.
Faison, Y., Burns, D., & Weed, D. (2016). Application of Ferrans and Powers quality of life
Fávero-Nunes, M. Â., & Santos, M. A. D. (2010). Depression and quality of life in mothers of
Felce, D. (1997). Defining and applying the concept of quality of life. Journal of Intellectual
Ferrans, C. E., Zerwic, J. J., Wilbur, J. E., & Larson, J. L. (2005). Conceptual model of health‐
58
DETERMINANTS OF QOL IN CAREGIVERS
Ferraioli, S. J., & Harris, S. L. (2013). Comparative effects of mindfulness and skills-based
parent training programs for parents of children with autism: Feasibility and preliminary
Fidika, A., Salewski, C., & Goldbeck, L. (2013). Quality of life among parents of children with
Friedland, J., Renwick, R., & McColl, M. (1996). Coping and social support as determinants of
Gabovitch, E. M., & Curtin, C. (2009). Family-centered care for children with autism spectrum
Garratt, A. M., Ruta, D. A. (1999). The patient generated index. In: Joyce, C.R.B., O’Boyle,
Gogoi, R. R., Kumar, R., & Deuri, S. P. (2017). Anxiety, depression, and quality of life in
mothers of children with intellectual disability. Open Journal of Psychiatry & Allied
Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to
Golnik, A., Ireland, M., & Borowsky, I. W. (2009). Medical homes for children with autism: a
Golnik, A., Scal, P., Wey, A., & Gaillard, P. (2012). Autism-specific primary care medical home
59
DETERMINANTS OF QOL IN CAREGIVERS
Gurney, J. G., McPheeters , M. L., Davis, M. M. (2006). Parental report of health conditions and
health care use among children with and without autism: National Survey of Children's
Graves, K.N., & Shelton, T.L. (2007). Family empowerment as a mediator between family-
Hand, B. N., Lane, A. E., De Boeck, P., Basso, D. M., Nichols-Larsen, D. S., & Darragh, A. R.
(2018). Caregiver burden varies by sensory subtypes and sensory dimension scores of
children with Autism. Journal of Autism and Developmental Disorders, 48(4), 1133-
1146.
Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research
Hawthorne, G., Herrman, H., & Murphy, B. (2006). Interpreting the WHOQOL-BREF:
Preliminary population norms and effect sizes. Social Indicators Research, 77(1), 37-59.
Hays, R. D., Sherbourne, C. D., & Mazel, R. M. (1993). The rand 36‐Item Health Survey
Hodgetts, S., Nicholas, D., Zwaigenbaum, L., & McConnell, D. (2013). Parents' and
disorder across service sectors. Social Science & Medicine, 96, 138-146.
60
DETERMINANTS OF QOL IN CAREGIVERS
Holt, E. W., Muntner, P., Joyce, C. J., Webber, L., & Krousel-Wood, M. A. (2010). Health-
related quality of life and antihypertensive medication adherence among older adults. Age
Homer, C. J., Klatka, K., Romm, D., Kuhlthau, K., Bloom, S., Newacheck, P., ... & Perrin, J. M.
(2008). A review of the evidence for the medical home for children with special health
Houben-van Herten, M., Bai, G., Hafkamp, E., Landgraf, J. M., & Raat, H. (2015). Determinants
Hung, J. H., Liu, W. Y., & Lin, Y. H. (2015). Preliminary cross-cultural adaptation and
101, e615.
Jennes-Coussens, M., Magill-Evans, J., & Koning, C. (2006). The quality of life of young men
Ji, B., Zhao, I., Turner, C., Sun, M., Yi, R., & Tang, S. (2014). Predictors of health-related
quality of life in Chinese caregivers of children with autism spectrum disorders: a cross-
Jia, H., Moriarty, D. G., & Kanarek, N. (2009). County-level social environment determinants of
Johnson, N., Frenn, M., Feetham, S., & Simpson, P. (2011). Autism spectrum disorder: Parenting
stress, family functioning and health-related quality of life. Families, Systems, & Health,
29(3), 232.
61
DETERMINANTS OF QOL IN CAREGIVERS
Jones, J., & Passey, J. (2005). Family adaptation, coping and resources: Parents of children with
Jönsson, A. C., Lindgren, I., Hallström, B., Norrving, B., & Lindgren, A. (2005). Determinants
of quality of life in stroke survivors and their informal caregivers. Stroke, 36(4), 803-808.
Juenger, J., Schellberg, D., Kraemer, S., Haunstetter, A., Zugck, C., Herzog, W., & Haass, M.
(2002). Health related quality of life in patients with congestive heart failure: Comparison
with other chronic diseases and relation to functional variables. Heart, 87(3), 235-241.
Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B.
with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9),
1214-1227.
Khanna, R., Madhavan, S. S., Smith, M. J., Tworek, C., Patrick, J. H., & Becker-Cottrill, B.
Kuhlthau, K. A., Bloom, S., Van Cleave, J., Knapp, A. A., Romm, D., Klatka, K., ... & Perrin, J.
M. (2011). Evidence for family-centered care for children with special health care needs:
Kuhlthau, K., Payakachat, N., Delahaye, J., Hurson, J., Pyne, J. M., Kovacs, E., & Tilford, J. M.
(2014). Quality of life for parents of children with autism spectrum disorders. Research
62
DETERMINANTS OF QOL IN CAREGIVERS
King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service delivery to children with
King, G., King, S., Rosenbaum, P., & Goffin, R. (1999). Family-centered caregiving and well-
being of parents of children with disabilities: linking process with outcome. Journal of
King, S., Rosenbaum, P., & King, G. (1995). The Measure of Processes of Care: A means to
University.
Kareem, M. S., & Ali, S. K. (2014). Quality of life for parents with children who have autism
Khan, M. F., & Humtsoe, M. K. (2016). Quality of life of mothers having children with autistic
Klassen, A. F., Anthony, S. J., Khan, A., Sung, L., & Klaassen, R. (2011). Identifying
determinants of quality of life of children with cancer and childhood cancer survivors: a
Klassen, A. F., Klaassen, R., Dix, D., Pritchard, S., Yanofsky, R., O'Donnell, M., ... & Sung, L.
(2008). Impact of caring for a child with cancer on parents’ health-related quality of
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C.
(2008). A national profile of the health care experiences and family impact of autism
63
DETERMINANTS OF QOL IN CAREGIVERS
spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6),
e1149-e1158.
Koren, P. E., DeChillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose
37, 305–321.
Kuhlthau, K., Payakachat, N., Delahaye, J., Hurson, J., Pyne, J. M., Kovacs, E., & Tilford, J. M.
(2014). Quality of life for parents of children with autism spectrum disorders. Research
Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012).
Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser,
e520–e529.
Lawoko, S., & Soares, J. J. (2003). Quality of life among parents of children with congenital
heart disease, parents of children with other diseases and parents of healthy
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver
stress in young people with autism spectrum disorders. Journal of Intellectual Disability
Lee, G. K., Lopata, C., Volker, M. A., Thomeer, M. L., Nida, R. E., Toomey, J. A., ... &
64
DETERMINANTS OF QOL IN CAREGIVERS
functioning autism spectrum disorders. Focus on Autism and Other Developmental
Légaré, F., Ratté, S., Stacey, D., Kryworuchko, J., Gravel, K., Graham, I. D., & Turcotte, S.
(2010). Interventions for improving the adoption of shared decision making by healthcare
Levy, S. E., Frasso, R., Colantonio, S., Reed, H., Stein, G., Barg, F. K., ... & Fiks, A. G. (2016).
Shared decision making and treatment decisions for young children with autism spectrum
Lin, J. D., Hu, J., Yen, C. F., Hsu, S. W., Lin, L. P., Loh, C. H., ... & Wu, J. L. (2009). Quality of
Lipstein, E. A., Lindly, O. J., Anixt, J. S., Britto, M. T., & Zuckerman, K. E. (2016). Shared
Litzelman, K., Catrine, K., Gangnon, R., & Witt, W. P. (2011). Quality of life among parents of
children with cancer or brain tumors: the impact of child characteristics and parental
Lord, C., McGee, J. (Eds.), (2001). Educating children with autism. Washington, DC:
Lv, R., Wu, L., Jin, L., Lu, Q., Wang, M., Qu, Y., & Liu, H. (2009). Depression, anxiety and
65
DETERMINANTS OF QOL IN CAREGIVERS
Macias, M. M., Saylor, C. F., Rowe, B. P., & Bell, N. L. (2003). Age-related parenting stress
differences in mothers of children with spina bifida. Psychological Reports, 93, 1223-
1232.
Mahani, M. K., Rostami, H. R., & Nejad, S. J. (2013). Investigation of quality of life
Malhi, P., & Singhi, P. (2005). Correlates of quality of life with epilepsy. The Indian Journal of
Malhotra, S., Khan, W., & Bhatia, M. S. (2012). Quality of Life of Parents having Children with
Manee, F., Ateya, Y., & Rassafiani, M. (2016). A Comparison of the Quality of Life of Arab
Mothers of Children with and without Chronic Disabilities. Physical & Occupational
Marsack, C. N., & Samuel, P. S. (2017). Mediating effects of social support on quality of life for
parents of adults with autism. Journal of Autism and Developmental Disorders, 47(8),
2378-2389.
Matheis, M., Matson, J. L., Burns, C. O., Jiang, X., Peters, W. J., Moore, M., ... Estabillo, J.
(2017). Factors related to parental age of first concern in toddlers with autism spectrum
Mathews, W. C., & May, S. (2007). EuroQol (EQ-5D) measure of quality of life predicts
adults under care. Health and Quality of Life Outcomes, 5(1), 1-9.
66
DETERMINANTS OF QOL IN CAREGIVERS
McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2005). Determinants of caregiving
burden and quality of life in caregivers of stroke patients. Stroke, 36(10), 2181-2186.
McDougall, J., & Tsonis, M. (2009). Quality of life in survivors of childhood cancer: a
1231.
McKechanie, A. G., Moffat, V. J., Johnstone, E. C., & Fletcher-Watson, S. (2017). Links
McLeroy, K. R., Bibeau, D., Steckler, A., & Glanz, K. (1988). An ecological perspective on
Meltzer, L. J. (2008). Brief report: sleep in parents of children with autism spectrum disorders.
Montazeri, A. (2009). Quality of life data as prognostic indicators of survival in cancer patients:
an overview of the literature from 1982 to 2008. Health and Quality of Life
Moons, P. Why call it health-related quality of life when you mean perceived health
Moons, P., Budts, W., & De Geest, S. (2006). Critique on the conceptualisation of quality of life:
Moons, P., Van Deyk, K., De Geest, S., Gewillig, M., & Budts, W. (2005). Is the severity of
congenital heart disease associated with the quality of life and perceived health of adult
67
DETERMINANTS OF QOL IN CAREGIVERS
Moreira, H., Carona, C., Silva, N., Frontini, R., Bullinger, M., & Canavarro, M. C. (2013).
Mugno, D., Ruta, L., D'Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in
parents of children and adolescents with pervasive developmental disorder. Health and
Muldoon, M. F., Barger, S. D., Flory, J. D., & Manuck, S. B. (1998). What are quality of life
Murphy, C. E. (2012). The effect of social support on quality of life for tinnitus sufferers.
Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest
heart ache:” Parents’ own words on how having a child in the autism spectrum has
affected their lives and their families’ lives. Research in Autism Spectrum Disorders,
3(3), 670-684.
Neece, C. L. (2014). Mindfulness-based stress reduction for parents of young children with
developmental delays: Implications for parental mental health and child behavior
Oliveira, S. E., Carvalho, H., & Esteves, F. (2016). Toward an understanding of the quality of
O'Neil, M. E., Palisano, R. J., & Westcott, S. L. (2001). Relationship of therapists' attitudes,
68
DETERMINANTS OF QOL IN CAREGIVERS
Ones, K., Yilmaz, E., Cetinkaya, B., & Caglar, N. (2005). Assessment of the quality of life of
Osoba, D. (2011). Health-related quality of life and cancer clinical trials. Therapeutic Advances
Panayiotou, G., & Karekla, M. (2013). Perceived social support helps, but does not buffer the
negative impact of anxiety disorders on quality of life and perceived stress. Social
Perumal, V., Veeraraghavan, V., & Lekhra, O. P. (2014). Quality of life in families of children
with autism spectrum disorder in India. Journal of Pharmacy Research, 8(6), 791-797.
Piovesan, J., Scortegagna, S. A., & Marchi, A. C. B. D. (2015). Quality of life and depressive
Pisula, E., & Porębowicz-Dörsmann, A. (2017). Family functioning, parenting stress and quality
of life in mothers and fathers of Polish children with high functioning autism or Asperger
Quittner, A. L., Glueckauf, R. L., & Jackson, D. N. (1990). Chronic parenting stress: Moderating
versus mediating effects of social support. Journal of Personality and Social Psychology,
59(6), 1266-78.
Raggi, A., Corso, B., Minicuci, N., Quintas, R., Sattin, D., De Torres, L., ... & Martinuzzi, A.
sectional study in Finland, Poland and Spain. PloS One, 11(7), e0159293.
69
DETERMINANTS OF QOL IN CAREGIVERS
Rantakokko, M., Iwarsson, S., Kauppinen, M., Leinonen, R., Heikkinen, E., & Rantanen, T.
(2010). Quality of life and barriers in the urban outdoor environment in old age. Journal
Rao, P. A., & Beidel, D. C. (2009). The impact of children with high functioning autism on
parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4),
437-451.
Ravens-Sieberer, U., Auquier, P., Erhart, M., Gosch, A., Rajmil, L., Bruil, J., ... & Mazur, J.
(2007). The KIDSCREEN-27 quality of life measure for children and adolescents:
chronically ill children with the German KINDL: first psychometric and content
Rizk, S., Pizur-Barnekow, K., & Darragh, A. R. (2011). Leisure and social participation and
Romeo, D. M., Cioni, M., Distefano, A., Battaglia, L. R., Costanzo, L., Ricci, D., … Mercuri E.
(2010). Quality of life in parents of children with cerebral palsy: Is it influenced by the
Rudolf, H., & Watts, J. (2002). Quality of life in substance abuse and dependency. International
70
DETERMINANTS OF QOL IN CAREGIVERS
Ruggeri, M., Gater, R., Bisoffi, G., Barbui, C., & Tansella, M. (2002). Determinants of
improve the lives of families of children with autism spectrum disorder. Journal of
Saban, K. L., Penckofer, S. M., Androwich, I., & Bryant, F. B. (2007). Health-related quality of
life of patients following selected types of lumbar spinal surgery: A pilot study. Health
Santelli, B., Ginsberg, C., Sullivan, S., & Neiderhauser, C. (2002). A collaborative study of
and positive behavior support: Addressing problem behavior in family contexts (pp. 439-
Seliner, B., Latal, B., & Spirig, R. (2016). When children with profound multiple disabilities are
Shu, B. C. (2009). Quality of life of family caregivers of children with autism: The mother's
Shu, B. C., & Lung, F. W. (2005). The effect of support group on the mental health and quality
71
DETERMINANTS OF QOL IN CAREGIVERS
Siah, P. C., & Tan, S. H. (2016). Relationships between sense of coherence, coping strategies
and quality of life of parents of children with autism in Malaysia: A case study among
Simon, A. E., Chan, K. S., & Forrest, C. B. (2008). Assessment of children’s health-related
quality of life in the United States with a multidimensional index. Pediatrics, 121(1),
e118-e126.
Singh, J. A., Nelson, D. B., Fink, H. A., & Nichol, K. L. (2005). Health-related quality of life
predicts future health care utilization and mortality in veterans with self-reported
Skevington, S. M., Lotfy, M., & O'Connell, K. A. (2004). The World Health Organization's
international field trial. A report from the WHOQOL group. Quality of Life
Smith, K. W., Avis, N. E., & Assmann, S. F. (1999). Distinguishing between quality of life and
health status in quality of life research: A meta-analysis. Quality of Life Research, 8(5),
447-459.
Staab, D., Wenninger, K., Gebert, N., Rupprath, K., Bisson, S., Trettin, M., ... & Wahn, U.
(1998). Quality of life in patients with cystic fibrosis and their parents: What is important
72
DETERMINANTS OF QOL IN CAREGIVERS
Steel, J. L., Geller, D. A., Robinson, T. L., Savkova, A. Y., Brower, D. S., Marsh, J. W., &
Sun, Y., Zhang, D., Yang, Y., Wu, M., Xie, H., Zhang, J., ... & Su, Y. (2017). Social support
moderates the effects of self-esteem and depression on quality of life among Chinese
mothers of children with Down syndrome, cerebral palsy, and autism spectrum disorder.
Tessier, D. W., Hefner, J. L., & Newmeyer, A. (2014). Factors related to psychosocial quality of
life for children with cerebral palsy. International Journal of Pediatrics, 1-6.
Testa, M. A., & Simonson, D. C. (1996). Assessment of quality-of-life outcomes. New England
Vlachioti, E., Matziou, V., Perdikaris, P., Mitsiou, M., Stylianou, C., … Moschovi, M. (2016).
Assessment of quality of life of children and adolescents with cancer during their
Vlahov, D., Freudenberg, N., Proietti, F., Ompad, D., Quinn, A., Nandi, V., & Galea, S. (2007).
Vohra, R., Madhavan, S., Sambamoorthi, U., & St Peter, C. (2014). Access to services, quality of
care, and family impact for children with autism, other developmental disabilities, and
73
DETERMINANTS OF QOL IN CAREGIVERS
Von Rueden, U., Gosch, A., Rajmil, L., Bisegger, C., & Ravens-Sieberer, U. (2006).
Ware Jr, J. E., Kosinski, M., & Keller, S. D. (1996). A 12-Item Short-Form Health Survey:
Ware Jr, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36):
Weidle, B., Jozefiak, T., Ivarsson, T., & Thomsen, P. H. (2014). Quality of life in children with
OCD with and without comorbidity. Health and Quality of Life Outcomes, 12(1), 152.
Wheeler, A. C., Skinner, D. G., & Bailey, D. B. (2008). Perceived quality of life in mothers of
children with fragile X syndrome. American Journal on Mental Retardation, 113(3), 159-
177.
Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health‐related quality of
Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of
parents who have a child with autism. Qualitative Health Research, 18(8), 1075-1083.
World Health Organization: Field Trial WHOQOL-100: Introduction and Background. Geneva:
74
DETERMINANTS OF QOL IN CAREGIVERS
World Health Organization. Development of the World Health Organization WHOQOL-BREF
Wisessathorn, M., Chanuantong, T., & Fisher, E. B. (2013). The impact of child's severity on
quality-of-life among parents of children with autism spectrum disorder: The mediating
Wyatt, K. D., List, B., Brinkman, W. B., Lopez, G. P., Asi, N., Erwin, P., ... & LeBlanc, A.
Xiang, Y. T., Luk, E. S., & Lai, K. Y. (2009). Quality of life in parents of children with
Yamada, A., Kato, M., Suzuki, M., Suzuki, M., Watanabe, N., Akechi, T., & Furukawa, T. A.
(2012). Quality of life of parents raising children with pervasive developmental disorders.
Yamazaki, S., Sokejima, S., Mizoue, T., Eboshida, A., & Fukuhara, S. (2005). Health-related
Yoder, P., Watson, L. R., & Lambert, W. (2015). Value-added predictors of expressive and
Zhang, Z. (2016). Model building strategy for logistic regression: purposeful selection. Annals of
75
DETERMINANTS OF QOL IN CAREGIVERS
Zuckerman, K. E., Lindly, O. J., & Sinche, B. K. (2015). Parental concerns, provider response,
and timeliness of autism spectrum disorder diagnosis. The Journal of Pediatrics, 166(6),
1431-1439.
76
Caregiver age M (SD) 32.7 (8.3) 33.9 (5.7) 31.7 (4.8) .17
Number of children in the home M (SD) 2.5 (1.6) 2.3 (1.2) 2.1 (1) .09
Male 30 20 59
Female 12 14 53
78
M (SD)
Variable ASD/ASD Other Concerns n = No Concerns F p η p2
Total Sample
Concerns 34 n = 112
n = 188
n = 42
PSI-SF Total Score 67.9 (25.63) 93.05 (26.48)∧ 62.38 (20.13) 60.17 (20.46) 35.8 <.01 .28
MPOC-20 Total Score 5.43 (1.3) 5.45 (1.28) 5.84 (1.11) 5.36 (1.29) 1.8 .17 .02
Environmental QoLa 75.29 (16.74) 65.3 (20)t 75.1 (17.7) 79.1 (13.3) 5.2 .01 .05
Physical QoLb 74.13 (18.55) 62.5 (21.1)t 75.8 (17.8) 77.9 (15.9) 5.3 .01 .06
Psychological QoLa 67.73 (17.84) 57.7 (21.7)∧ 73.9 (15.6) 69.6 (15.4) 5.1 .01 .05
Social QoLa 68.35 (22.64) 52.2 (27.2)∧ 72.3 (16.4) 73.2 (19.5) 9.9 <.01 .09
Note. PSI-SF = Parenting Stress Index- Short Form; MPOC-20 = Measure of Processes of Care;
∧
ASD/ASD Concerns group significantly different than Other Concerns and No Concerns groups.
t
ASD/ASD Concerns group significantly different than No Concerns group.
a
Controlling for income, b Controlling for income and number of children in the home.
79
90
80
t
70 t
∧
60 ∧
50 ASD/ASD Concern
Other Concern
40
No Concern
30
20
10
0
Environmental Physical Psychological Social
Environmental and Psychological controlled for income, Physical and Social controlled for income and number of children in the home.
t
ASD/ASD Concerns group significantly different than No Concerns group.
∧
ASD/ASD Concerns group significantly different than Other Concerns and No Concerns groups.
80
Other Concerns and No Concerns groups controlled for income.
∧
Significantly higher than Social and Psychological QoL.
t
Significantly higher than Social QoL.
81
Intercept 63.1
82
Intercept 62.6
*p < .05.
**p < .01.
83
84
85
86
APPENDIX A.
Domain Items
Physical To what extent do you feel that physical pain prevents you from doing what you need to do?
How much do you need any medical treatment to function in your daily life?
Do you have enough energy for everyday life?
How well are you able to get around?
How satisfied are you with your sleep
How satisfied are you with your ability to perform your daily living activities?
How satisfied are you with your capacity for work?
87
UNIVERSITY OF WASHINGTON
Curriculum Vitae
Office Address:
University of Washington
Department of Psychology
119A Guthrie Hall
Box 351525
Seattle, WA 98195
Phone: (609) 217-6267
E-mail: [email protected]
Education:
2017-present University of California, Los Angeles, Department of Psychiatry
Pre-Doctoral Clinical Psychology Internship
Research Support:
2014 Arc of Washington Trust Fund Research Grant ($10,000)
Title: Evaluating the Effectiveness of Parent to Parent Service Usage in Washington
State Across Diverse Ethnic Groups
Fellowship Appointments:
2014-15 Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
Community Fellow, University of Washington
Research Experience:
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Description: This study examined how parenting style at 9 months predicted growth in
infant social engagement (i.e., social smiling) between 9 and 18 months during a free-play
interaction in infants at high (HR-infants) and low (LR-infants) familial risk for Autism
Spectrum Disorder (ASD). Results indicated that across all infants, higher levels of
maternal responsiveness were concurrently associated with higher levels of social
smiling, while higher levels of maternal directiveness predicted slower growth in social
smiling. When accounting for maternal directiveness, which was higher in mothers of
HR-infants, HR-infants exhibited greater growth in social smiling than LR-infants.
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Principal Investigators: Wendy Stone, Ph.D., Daniel Messinger, Ph.D., & Zachary
Warren, Ph.D.
Role: Graduate Student Research Associate
Description: The objective of this longitudinal, multisite study was to examine the early
development of social attention, affect, and joint attention and their relation to later
autism symptomatology. Administered assessments with study participants including
the Mullen Scales of Early Learning, the Screening Tool for Autism in Toddlers
(STAT), and the Vineland Adaptive Behavior Scales.
2008-11 University of Pennsylvania, Center for Mental Health Policy & Services Research
Study: Philadelphia Autism Instructional Methods Study (AIMS)
Principal Investigator: David Mandell, Sc.D.
Role: Research Specialist
Description: Philly AIMS was the largest randomized controlled trial to date of a
school-based intervention for children with ASD. The objective of the study was to
compare the Strategies for Teaching based on Autism Research (STAR) program to
the Structured Teaching program in K-2 Autism Support Classrooms throughout the
School District of Philadelphia. Recruited over 400 families, teachers, and classroom
staff members, performed monthly fidelity videotaping and coding in 22 classrooms,
and administered more than 200 ADOS as part of the student assessment battery.
Coordinated the pre and post evaluations and organized teams of psychologists and
graduate student assessors. Presented at parent advocacy and school district meetings
and maintained IRB documentation for four regulatory offices, including the
University of Pennsylvania, the Children’s Hospital of Philadelphia, the City of
Philadelphia, and the School District of Philadelphia.
Clinical Experience:
2017 UCLA Child OCD Intensive Outpatient Program (IOP), Los Angeles, CA
Role: Clinical Psychology Intern
Supervisors: Lindsey Bergman, Ph.D. and Michelle Rozenman, Ph.D.
Description: Co-led treatment groups and provided individual therapy for children ages 5-
17 with severe obsessive-compulsive disorder in an IOP treatment setting.
2017 UCLA Resnick Neuropsychiatric Hospital Child and Adolescent Inpatient Unit,
Los Angeles, CA
Role: Clinical Psychology Intern
Supervisors: Michael Strober Ph.D., Rhonda Sena, Ph.D., and Mark DeAntonio, MD
Description: Worked on a multidisciplinary care team to provide individual and family
therapy and case management for youth with complex psychopathology.
2017 UCLA Child and Adult Neurodevelopmental (CAN) Clinic, Los Angeles, CA
Role: Clinical Psychology Intern
Supervisors: Enjey Lin, Ph.D., BCBA-D and Mina Park, Ph.D., BCBA-D
Description: Conducted comprehensive diagnostic evaluations and provided treatment
consultations individual therapy to individuals with autism spectrum disorder and other
neurodevelopmental disabilities.
91
2017 UCLA PEERS® Social Skills Program for Young Adults, Los Angeles, CA
Role: Clinical Psychology Intern
Supervisors: Elizabeth Laugeson, Psy.D.
Description: Led groups and served as a behavioral coach for the PEERS® Program
for young adults with ASD and other social challenges.
92
2015 Emotion Regulation Group, Seattle Children’s Hospital Autism Center, Seattle, WA
Role: Co-Leader
Supervisor: Emily Rastall, Ph.D.
Description: Co-led a weekly emotion regulation group for school-aged children with
ASD and emotion regulation difficulties. Taught children coping skills based on
strategies from Dialectical Behavioral Therapy (DBT) and provided behavioral
support during the group.
2014-15 Pediatric Feeding Program, Seattle Children’s Hospital Autism Center, Seattle, WA
Role: Practicum Therapist
Supervisor: Danielle Dolezal, Ph.D., BCBA-D
93
Description: Led therapy sessions and co-led intakes for children and adolescents with
developmental and genetic disorders (e.g., ASD, Down Syndrome, Cystic Fibrosis)
with Avoidant/Restrictive Food Intake Disorder using principles of Applied
Behavior Analysis and Cognitive Behavioral Therapy for anxiety. Collected data and
tracked feeding progress. Met with parents to provide adjunctive coaching. Attended
weekly rounds with a multidisciplinary feeding team comprised of a psychologist,
nutritionist, occupational therapist, practitioner, and two behavioral technicians.
2013-14 Preschool Social Skills Group, University of Washington Autism Center, Seattle, WA
Role: Co-Leader
Supervisors: Annette Estes, Ph.D., Rachel Lowy, M.S., CF-SLP, Jo Ristow, M.S., CF-
SLP
Description: Co-led a social skills group for preschool children with ASD using the
94
Social Thinking and the Stop and Think! social skills curricula. Provided behavioral
support during the group and led activities.
2011 University of Pennsylvania Adult Social Learning Disorders Program, Social Skills
Seminar, Philadelphia, PA
Supervisor: Carol Moog, Ph.D.
Roles: Social Coach Coordinator
Description: This program was developed to assist adults with social challenges
including ADHD, ASD, and social anxiety disorder. The program comprised two
hours of didactics and one hour of practice with social coach. Recruited and
supervised social coaches, developed the social coaching curriculum (e.g., speed
conversations, mock job interviews, dating panels), planned social activities in the
community (e.g., trivia night), and matched coaches with mentees.
2009-10 University of Pennsylvania Adult Social Learning Disorders Program, Social Skills
Seminar, Philadelphia, PA
Supervisor: Carol Moog, Ph.D.
Roles: Social Coach
Description: Acted as a social coach for several individuals with social challenges.
Helped mentees set individual goals for overcoming social challenges and
accompanied them to social events in the community while providing in-vivo
feedback.
95
Internalizing Disorders
2015 Obsessive Compulsive Disorder (OCD)
Neil Kirkpatrick, Ph.D., Hope Sparks (8 hours)
Externalizing Disorders
2015-16 Behavioral Parent Training
Neil Kirkpatrick, Ph.D., University of Washington (120 hours)
Developmental Disorders
2015 Down Syndrome (36th Annual Duncan Seminar)
Seattle Children’s Hospital (8 hours)
Suicide
2013 Suicide Assessment
Marsha Linehan, Ph.D. (20 hours)
Personality
2012 Clinical Personality Assessment: MMPI-2
96
Professional Affiliations:
International Society for Autism Research (INSAR)
Society for Implementation Research Collaboration (SIRC)
Service:
2015-16 Society for Implementation Research Collaboration (SIRC)
Role: Student Officer
Description: Assisted with recruiting SIRC student members and managing the Student
Network of Expertise (NoE). Responsibilities included attending twice monthly officer
meetings, reviewing applications for the Student NoE, matching Student NoE members
with implementation science mentors in the New Investigator NoE, planning social and
networking events for students at SIRC conferences, and advising SIRC officers about
how to effectively support SIRC student members.
Teaching:
2014- 17 HuskyMOSSAIC: Mentoring, Organization and Social Support for Autism Inclusion on
Campus
Role: Affiliate Instructor
Teaching Assistantships:
Graduate courses:
1 quarter Clinical Methods
Instructor: Corey Fagan, Ph.D. & Danny O’Rourke, Ph.D.
Role: Provided teaching assistance to the Clinic Director, Dr. Fagan, for the initial course
of the clinical training sequence for first year clinical psychology doctoral students.
Demonstrated intake sessions for live observation, modeled clinical interviewing skills,
supervised student role plays and provided feedback, and met individually with students
to practice skills.
1 quarter Ethics
Instructor: Corey Fagan, Ph.D.
Role: Provided teaching assistance to Dr. Fagan, including filling in as a substitute
instructor and selecting and preparing course materials. Course was focused on teaching
students about the American Psychological Association's Ethical Standards for
Psychologists and helping them develop an awareness of state-specific laws. Time in
class was focused on discussions about ethical dilemmas.
97
Undergraduate courses:
5 quarters Abnormal Psychology
Instructor: Deborah Chun, Ph.D.
4 quarters Developmental Psychology
Instructors: Betty Repacholi, Ph.D. (2011-13) & Katherine Monahan, Ph.D. (2016)
6 quarters Undergraduate Psychology Writing Center
Instructor: Patti Loesche, Ph.D.
1 quarter Introduction to Psychology
Instructor: Jonathon Brown, Ph.D.
Lectures by Invitation:
August 6, 2015 Child Psychopathology, Clinical Psychology, University of Washington
July 10, 2015 Introduction to Autism, Child & Adolescent Behavior Disorders, University of
Washington
May 26, 2015 Child Psychopathology, Clinical Psychology, University of Washington
May 26, 2015 Child Psychopathology, Clinical Psychology, University of Washington
Sept. 15, 2014 ASAP! Project, Implementation Science Seminar, University of Washington
Oct. 10, 2013 Introduction to Autism, Child & Adolescent Behavior Disorders, University of
Washington
May 10, 2013 Introduction to Autism, Seattle Health Services Advisory Committee
Bibliography:
98
1. Locke, J., Wolk, C. B., Harker, C. M., Olsen, A., Shingledecker, T., Barg, F., Mandell, D. S., Beidas
R (2016). Pebbles, rocks, and boulders: The implementation of a school-based social engagement
intervention for children with autism. Autism.
2. Harker, C. M., Karp, E. A., Edmunds, S. R., Ibañez, L. V., & Stone, W. L. (2016). Predicting the
use of an evidence-based intervention for autism in birth-to-three programs. Proceedings of the 3rd
biennial conference of the Society for Implementation Research Collaboration (SIRC) 2015:
Advancing efficient methodologies through community partnerships and team science. Implementation
Science, 11, (Suppl 1): A38.
3. Locke, J., Wolk, C. B., Harker, C. M., Olsen, A., Shingledecker, T., Barg, F., Mandell, D. S., Beidas,
R. (2016). Proceedings of the 3rd biennial conference of the Society for Implementation Research
Collaboration (SIRC) 2015: Advancing efficient methodologies through community partnerships
and team science. Implementation Science, 11, (Suppl 1): A28.
4. Harker, C. M., Ibañez, L. V., Nguyen, T. P., Messinger, D. M., & Stone, W. L. (2016). The effect of
parenting style on social smiling in infants at high and low risk for ASD. Journal of Autism and
Developmental Disorders, 46(7), 2399-407, doi: 10.1007/s10803-016-2772-y.
5. Locke, J., Rotheram-Fuller, E., Xie, M., Harker, C.M., Mandell, D.S. (2013). Correlation of
cognitive and social outcomes among children with autism spectrum disorder in a randomized trial
of behavioral intervention. Autism, 18(3), doi: 10.1177/1362361313479181.
Abstracts:
1. Harker, C. M., Ibañez, L. V., Edmunds, S. R., Karp, E. A., & Stone, W. L. What happens after the
workshop? Factors associated with sustained use of an evidence-based intervention for children with ASD in community
practice. International Meeting for Autism Research, Baltimore, MD. May 12, 2016. Poster.
2. Karp, E. A., Ibañez, L.V., Edmunds, S.R., Harker, C.M., & and Stone, W.L. Service providers perspectives of
obstacles to ASD-specialized services. International Meeting for Autism Research, Baltimore, MD. May 12,
2016. Oral Presentation.
3. Harker, C. M., Karp, E. A., Edmunds, S. R., Ibañez, L. V., & Stone, W. L. Predicting the use of an evidence-
based intervention for autism in birth-to-three programs. Society for Implementation Research Collaboration
Conference, Seattle, WA. September 25, 2015. Poster.
4. Locke, J., Wolk, C.B., Harker, C.M., Olsen, A., Shingledecker, T., Barg, F., Mandell, D.S., Beidas, R.
Pebbles, rocks, and boulders: The implementation of a school-based social engagement intervention for children with autism.
Society for Implementation Research Collaboration Conference, Seattle, WA. September 25, 2015. Oral
presentation.
5. Berends, V.N., Dolezal, D.N., Persons, A., Harker, C.M. Evaluation of a multielement assessment and
behavioral training for pill-swallowing difficulties. Association for Behavioral Analysis International, San
Antonio, TX. May 25, 2015. Poster.
6. Ibañez, L.V., Harker, C.M., & Stone, W.L. A screen-refer-treat model to promote earlier access to
ASD intervention. International Meeting for Autism Research, Salt Lake City, May 16, 2015. Oral
presentation.
7. Harker, C.M., Edmunds, S.R., Ibañez, L.V., Froehlig, C., Karp, E. Nanda, S., & Stone, W.L. Factors
associated with intervention uptake in community practice: Acceptability, feasibility, and implementation climate.
International Meeting for Autism Research, Salt Lake City, UT. May 16, 2015. Oral presentation.
99
8. Karp, E., Ibañez, L.V., Edmunds, S.R., Harker, C.M., & and Stone, W.L. Parental and child characteristics
that contribute to parental concerns in toddlers at high risk for autism spectrum disorder over time. International
Meeting for Autism Research, Salt Lake City, May 14, 2015. Poster.
9. Edmunds, S.R., Ibañez, L.V., Harker, C.M., Karp, E., & and Stone, W.L. Sex and ASD risk status predict
both 3-year expressive language and expressive language growth from 1 to 3 years in children at high and low risk for
ASD. International Meeting for Autism Research, Salt Lake City, May 14, 2015. Poster.
10. Harker, C. M., Nguyen, T. P., Ibañez, L. V., Nanda, S., Karp, E., Messinger,, D. S., & Stone, W. L.
(2014). The relation between infant social engagement and maternal behavior in infants at high-risk for autism spectrum
disorder. International Meeting for Autism Research, Atlanta, GA. May 16, 2014. Poster.
11. Ibañez, L.V., Edmunds, S.R., Harker, C.M., Karp, E.A., & Stone, W.L. (2014). Evaluating the impact of
statewide community-based training for early intervention providers. International Meeting for Autism Research,
Atlanta, GA. May 15, 2014. Poster.
12. Harker, C. M., Nguyen, T. P., Ibañez, L. V., & Stone, W. L. (2013). Maternal behavior during free play with
infants at high vs. low risk for autism spectrum disorder. American Psychological Association’s Annual
Convention, Honolulu, HI. July 31, 2013. Poster.
13. Harker, C. M., Reisinger, E. M., Shin, S., & Mandell, D. S. Using the ADOS severity metric to evaluate the
trajectory of students with ASD in a large public school district. International Meeting for Autism Research, San
Diego, CA. May 12, 2011. Poster.
14. Harker, C. M., Reisinger, E. M, Sherman, A. D, Xie, M., Shin, S., & Mandell, D. S. (2010). Using the
revised ADOS algorithm to evaluate a behavioral intervention in a large public school district. Penn State National
Autism Conference, State College, PA. August 2010. Poster.
15. Sherman, A. D, Shin, S., Harker, C. M., Reisinger, E. M, & Mandell, D. S. (2010). Stress in 1 parent and 2
parent households with children with autism. International Meeting for Autism Research, Philadelphia, PA.
May 22, 2010. Poster.
16. Reisinger, E. R, Xie, M., Mandell, D. S, Shin, S., Sherman, A. D, & Harker, C. M. (2010). Parent teacher
concordance on the social responsiveness scale for children with a putative diagnosis of ASD. International Meeting for
Autism Research, Philadelphia, PA. May 21, 2010. Poster.
17. Harker, C. M., Reisinger, E. M, Sherman, A. D, Xie, M., Shin, S., & Mandell, D. S. (2010). Using the
ADOS severity metric to evaluate a behavioral intervention in a large public school district. International Meeting for
Autism Research, Philadelphia, PA. May 21, 2010. Poster.
100